Resource Library

Therapeutic Disease Areas

Cancers (Oncology) 

Cancer Research Organizations

American Cancer Society

The mission of the American Cancer Society is to improve the lives of people with cancer and their families through advocacy, research, and patient support, to ensure everyone has an opportunity to prevent, detect, treat, and survive cancer. 

American Society of Clinical Oncology

ASCO’s mission is Conquering cancer through research, education, and promotion of the highest quality, equitable patient care. 

Memorial Sloan Kettering Cancer Center

The people of Memorial Sloan Kettering Cancer Center (MSK) are united by a singular mission: ending cancer for life. Our specialized care teams provide personalized, compassionate, expert care to patients of all ages. Informed by basic research done at our Sloan Kettering Institute, scientists across MSK collaborate to conduct innovative translational and clinical research that is driving a revolution in our understanding of cancer as a disease and improving the ability to prevent, diagnose, and treat it. MSK is dedicated to training the next generation of scientists and clinicians, who go on to pursue our mission at MSK and around the globe. One of the world’s most respected comprehensive centers devoted exclusively to cancer, we have been recognized as one of the top two cancer hospitals in the country by U.S. News & World Report for more than 30 years. 

National Cancer Institute

The National Cancer Institute (NCI) is the federal government’s principal agency for cancer research and training. NCI leads, conducts, and supports cancer research across the nation to advance scientific knowledge and help all people live longer, healthier lives. 

Cancer Patient Advocates 

Association of Community Cancer Centers

ACCC is a leader in the cancer care community, that brings together stakeholders to create comprehensive solutions that positively impact the patient experience and patient outcomes. ACCC is recognized as a collaborative and diverse organization that leverages the robust knowledge of its multidisciplinary membership to provide indispensable resources. 

Karen’s Club

Our mission is to empower patients of color with the knowledge and trust to pursue clinical trials that can save or extend their lives. We envision a world where communities of color receive the best and most advanced healthcare available, allowing them to live full, healthy lives. 

Lazarex Cancer Foundation

At Lazarex Cancer Foundation, we strive to improve cancer health outcomes, FDA cancer clinical trial diversity and enrollment, and patient access to care by providing assistance with clinical trial navigation, reimbursing trial related travel costs, and partnering with at-risk communities to mobilize resources. The vision of Lazarex Cancer Foundation is that everyone affected by cancer will have hope, dignity, support and the most advanced treatments made available to them at all stages of their journey. 

Touch, The Black Breast Cancer Alliance

Touch, The Black Breast Cancer Alliance drives the collaborative efforts of patients, survivors, advocates, advocacy organizations, health care professionals, researchers and pharmaceutical companies to work collectively, with accountability, towards the common goal of eradicating Black Breast Cancer. 

Cancer Stories 

American Cancer Society

The mission of the American Cancer Society is to improve the lives of people with cancer and their families through advocacy, research, and patient support, to ensure everyone has an opportunity to prevent, detect, treat, and survive cancer. 

City of Hope, Cancer Treatment Centers of America

The mission of City of Hope is to transform the future of cancer care. Each day, we work to turn science into a practical benefit, hope into reality. We accomplish that by unifying the branches of biomedical research, treatment and academia. Having scientists, treatment staff and manufacturing facilities in convenient proximity, our treatment advances can travel from laboratory to patient with life-saving speed. 

Cardiovascular and Circulatory Diseases 

Cardiovascular and Circulatory Disease Research Organizations 

Cardiovascular Research Foundation

We help doctors improve survival and quality of life for people suffering from heart and vascular disease. 

American Heart Association

The mission of the AHA is Building healthier lives, free of cardiovascular diseases and stroke. Our mission drives everything we do. What We Do: To improve the lives of all Americans, we provide public health education in a variety of ways. 

Heart Disease Research Institute

HDRI is an organization that provides information and assistance to the general public concerning heart disease and other degenerative diseases. In addition, the Organization researches and educates the public about therapies which have proven healing qualities, with emphasis placed on the prevention and treatment of heart disease. 

Cardiovascular and Circulatory Disease Stories 

American Heart Association

The mission of the AHA is Building healthier lives, free of cardiovascular diseases and stroke. Our mission drives everything we do. What We Do: To improve the lives of all Americans, we provide public health education in a variety of ways.

Mount Sinai

The mission of the Mount Sinai Health System is to provide compassionate patient care with seamless coordination and to advance medicine through unrivaled education, research, and outreach in the many diverse communities we serve. 

Victor Chang Cardiac Research Institute

The Victor Chang Cardiac Research Institute is renowned for the quality of its scientific discoveries and is dedicated to finding cures for cardiovascular disease through world-class and cutting-edge medical research. 

Cardiovascular and Circulatory Disease Patient Advocates 

The Mended Hearts, Inc.

The mission of The Mended Hearts, Inc. is to inspire hope and improve the quality of life of heart patients and their families through ongoing peer-to-peer support, education, and advocacy. The vision is to be the premier nationwide resource and peer-to-peer support network for all heart patients and their families affected by Heart Disease across the lifespan.  

Global Heart Hub

The Mission of Global Heart Hub is to ensure the best possible outcomes for people living with heart diseases by creating a global cardiovascular disease community that advocates for, supports, educates and empowers patients and caregivers. 

American Heart Association

The mission of the AHA is Building healthier lives, free of cardiovascular diseases and stroke. Our mission drives everything we do. What We Do: To improve the lives of all Americans, we provide public health education in a variety of ways. 

Digestive Diseases 

Digestive Disease Research Organizations 

Beyond Celiac

Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. 

Crohn’s & Colitis Foundation

The mission of the Crohn’s & Colitis Foundation is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. 

International Foundation for Gastrointestinal Disorders

IFFGD’s mission is to inform, assist, and support people affected by gastrointestinal (GI) disorders. We work with patients, families, physicians, nurses, practitioners, investigators, regulators, employers, and others to broaden understanding about GI disorders, support and encourage research, and improve digestive health in adults and children. 

Digestive Disease National Coalition

The DDNC’s mission is to work cooperatively to improve access to and the quality of digestive disease health care in order to promote the best possible medical outcome and quality of life for current and future patients. 

Digestive Disease Stories 

Cedars Sinai

As a leading academic healthcare organization, our mission is to elevate the health status of the communities we serve. We deliver exceptional healthcare enhanced by research and education, prioritize high-quality care for all with equity and compassion, transform biomedical discoveries and innovations for better health, and educate tomorrow’s physicians, nurses, researchers, and healthcare professionals.  

International Foundation For Gastrointestinal Disorders

IFFGD’s mission is to inform, assist, and support people affected by gastrointestinal (GI) disorders. We work with patients, families, physicians, nurses, practitioners, investigators, regulators, employers, and others to broaden understanding about GI disorders, support and encourage research, and improve digestive health in adults and children. 

Canadian Society of Intestinal Research

Canadian Society of Intestinal Research is committed to improving the lives of people with gastrointestinal and liver conditions, supporting research, advocating for appropriate patient access to healthcare, and promoting gastrointestinal and liver health. 

Digestive Disease Patient Advocates 

IBS Patient Support Group

The IBS Patient Support Group community was launched as a public education advocacy community for sufferers. We believe in evidenced-based medicine and non-anecdotal treatment options for patients. 

American Gastroenterological Association

AGA’s vision is a world free from digestive diseases. That’s why we’ve made it our mission to empower clinicians and researchers to improve digestive health. 

Canadian Society of Intestinal Research

Canadian Society of Intestinal Research is committed to improving the lives of people with gastrointestinal and liver conditions, supporting research, advocating for appropriate patient access to healthcare, and promoting gastrointestinal and liver health. 

Musculoskeletal Diseases 

Musculoskeletal Disease Research Organizations 

Rheumatoid Arthritis Foundation

The Rheumatology Research Foundation leads the way in tackling rheumatology’s challenges and working toward discoveries that could impact the lives of millions of people living with rheumatic disease. 

Osteoarthritis Research Society International

OARSI is the premier international organization for scientists and health care professionals focused on the prevention and treatment of osteoarthritis through the promotion and presentation of research, education and the worldwide dissemination of new knowledge. 

Muscular Dystrophy Association

Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA’s mission is to empower the people we serve to live longer, more independent lives. 

Musculoskeletal Disease Stories 

Rheumatology Research Foundation

Rheumatoid Arthritis Foundation’s mission is guided by a relentless focus to help fight RA. We will strive to bring inspiration and motivation to everyone who suffers with this disease. We promote a healthy lifestyle to patients with RA through education, information, coaching and support working within our local communities. We are committed to maintaining respect and integrity in all aspects of our mission. 

Penn Medicine Lancaster General Health

Penn Medicine Lancaster General Health is a not-for-profit health system with a comprehensive network of care, including more than 300 primary-care and specialty physicians; outpatient and Urgent Care services; and four hospitals with a total of 786 licensed beds: Lancaster General Hospital, Women & Babies Hospital, Lancaster Rehabilitation Hospital, and Lancaster Behavioral Health Hospital. 

Joint & Spine Center

Musculoskeletal Disease Patient Advocates 

Arthritis Foundation

The Arthritis Foundation is boldly pursuing a cure for America’s #1 cause of disability while championing the fight to conquer arthritis with life-changing science, resources, advocacy and community connections. 

Global Alliance for Musculoskeletal Health

The Global Alliance for Musculoskeletal Health (G-MUSC) is a network of national and international patient, professional, scientific organizations around the world. G-MUSC is focused on health policy and evidence, with a mandate to develop strategies and set the agenda, aimed at improving quality of life for individuals around the world by implementing effective prevention and treatment through its unified voice and global reach. 

Fibromyalgia Care Society of America

The mission of the Fibromyalgia Care Society of America (FCSA) is to provide education, care, and supportive services to individuals living with fibromyalgia, their families, and the community at large. FCSA will also work to educate medical providers on the appropriate diagnostic, care, and treatment of those living with this condition. 

Immunology 

Immunology Disease Research Organizations 

Dana-Farber Cancer Institute

Dana-Farber Cancer Institute has been committed to providing adults and children with cancer with the best treatment available today while developing tomorrow’s cures through cutting-edge research. Read about our history, our breakthroughs, and the resources that help us support the health of our neighborhoods and communities. 

City of Hope

City of Hope is dedicated to making a difference in the lives of people with cancer, diabetes and other life-threatening illnesses. Our team of more than 11,000 includes researchers, associates, scientists, doctors, nurses, allied health professionals, graduate students, fundraising specialists, marketing professionals, volunteers and support staff. All of us are united by our desire to find cures and save lives. 

La Jolla Institute for Immunology

La Jolla Institute has solely dedicated itself to understanding the far-reaching power of the immune system because we believe that no other biomedical discipline has greater implications for human health than immunology. 

Immunology Disease Stories 

La Jolla Institute for Immunology

La Jolla Institute has solely dedicated itself to understanding the far-reaching power of the immune system because we believe that no other biomedical discipline has greater implications for human health than immunology. 

Children’s Hospital of Philadelphia

Children’s Hospital of Philadelphia (CHOP) is the nation’s first hospital devoted exclusively to the care of children. Built on a foundation of delivering safe, high-quality, family-centered care, the Hospital has fostered medical discoveries and innovations that have improved pediatric healthcare and saved countless children’s lives. 

International Immunology Foundation

The International Immunology Foundation sponsors research on advanced treatments for cancer. 

Immunology Disease Patient Advocates 

Immune Deficiency Foundation

The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency through fostering a community empowered by advocacy, education, and research. 

Immunodeficiency UK

Our aims are to help ensure that those affected by a primary and secondary immunodeficiency have the knowledge needed to manage their condition effectively and to ensure that their health needs are understood and addressed by those involved in policy and delivery of healthcare. 

Infectious Diseases 

Infectious Disease Research Organizations 

Partnership to Fight Infectious Disease

The Partnership to Fight Infectious Disease (PFID) is a group of patients, providers, community organizations, academic researchers, business and labor groups, and infectious disease experts working to raise awareness of threats posed by infectious disease. PFID will explore and advance solutions to address the need to enhance pandemic preparedness, address the growing threat of antimicrobial resistance and the need for new antimicrobial treatments; and empower informed choice and confidence in COVID-19 vaccines. 

Infectious Disease Society of America

The Infectious Diseases Society of America (IDSA) is a community of over 12,000 physicians, scientists and public health experts who specialize in infectious diseases. Our purpose is to improve the health of individuals, communities, and society by promoting excellence in patient care, education, research, public health, and prevention relating to infectious diseases. 

Global Health Progress

Developing vaccines, therapeutics and diagnostics for a range of diseases of the developing world. 

International Society for Infectious Diseases

At the International Society for Infectious Diseases (ISID), our mission is to support health professionals, non-government organizations, and governments around the world in their work to prevent, investigate, and manage infectious disease outbreaks when they occur. ISID has a particular focus in countries that have limited resources and which disproportionately bear the burden of infectious diseases. The ISID recognizes the intersection of infectious diseases in humans, animals, and plants, that infectious diseases cross all national and regional boundaries, and that effective long-term solutions require international scientific exchange and cooperation. 

Infectious Disease Stories 

Peggy Lillis Foundation

Peggy Lillis Foundation is building a nationwide C. diff (Clostridioides difficile) awareness movement by educating the public, empowering advocates, and shaping policy. 

Partnership to Fight Infectious Diseases

The Partnership to Fight Infectious Disease (PFID) is a group of patients, providers, community organizations, academic researchers, business and labor groups, and infectious disease experts working to raise awareness of threats posed by infectious disease. PFID will explore and advance solutions to address the need to enhance pandemic preparedness, address the growing threat of antimicrobial resistance and the need for new antimicrobial treatments; and empower informed choice and confidence in COVID-19 vaccines. 

Infectious Disease Patient Advocates 

Partnership to Fight Infectious Disease

The Partnership to Fight Infectious Disease (PFID) is a group of patients, providers, community organizations, academic researchers, business and labor groups, and infectious disease experts working to raise awareness of threats posed by infectious disease. PFID will explore and advance solutions to address the need to enhance pandemic preparedness, address the growing threat of antimicrobial resistance and the need for new antimicrobial treatments; and empower informed choice and confidence in COVID-19 vaccines. 

International Society for Infectious Diseases

At the International Society for Infectious Diseases (ISID), our mission is to support health professionals, non-government organizations, and governments around the world in their work to prevent, investigate, and manage infectious disease outbreaks when they occur. ISID has a particular focus in countries that have limited resources and which disproportionately bear the burden of infectious diseases. The ISID recognizes the intersection of infectious diseases in humans, animals, and plants, that infectious diseases cross all national and regional boundaries, and that effective long-term solutions require international scientific exchange and cooperation. 

Endocrinology & Metabolic Disease 

Endocrinology & Metabolic Disease Research Organizations 

Endocrine Society

Endocrine Society is a global community of physicians and scientists dedicated to accelerating scientific breakthroughs and improving patient health and wellbeing. 

American Diabetes Association

ADA’s mission is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. We lead the fight against the deadly consequences of diabetes and fight for those affected by diabetes. 

Endocrinology & Metabolic Disease Stories 

American Diabetes Association

ADA’s mission is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. We lead the fight against the deadly consequences of diabetes and fight for those affected by diabetes. 

Beyond Type 1

Beyond Type 1 is a nonprofit organization changing what it means to live with diabetes. Through platforms, programs, resources and grants, Beyond Type 1 is uniting the global diabetes community and providing solutions to improve lives today. 

Endocrinology & Metabolic Disease Patient Advocates 

Diabetes Patient Advocacy Coalition

DPAC is co-founded and run by people with diabetes who understand that like diabetes, advocacy is a long-term process with no quick fixes. DPAC formed because the patient voice was missing from important policy conversations in Congress and the states. We identify what matters most and help empower advocates to take action. Share your story to help keep policy makers’ attention on people with diabetes! 

Society for Endocrinology

The Society for Endocrinology is the UK home of endocrinology. We bring together the global endocrine community to share ideas and advance our discipline. 

Diabetes Advocacy Alliance

DAA’s mission is To unite and align key diabetes stakeholders and the larger diabetes community around diabetes-related policy and legislative efforts to elevate diabetes on the national agenda. 

Neuroscience/Central Nervous System Diseases 

Neuro Research Organizations 

American Brain Foundation

The American Brain Foundation promotes and invests in research across the whole spectrum of brain disease. Utilizing a whole-brain approach gives us an edge in understanding and combating brain disease. We believe that when we cure one of these diseases, we will cure many. 

Child Neurology Foundation

The mission of CNF is To serve as a collaborative center of education, resources, and support for children and their families living with neurologic conditions, and facilitate connection with medical professionals who care for them. 

The Carter Centers for Brain Research

The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations is a collaborative initiative among sponsored Centers of Excellence in the field of holoprosencephaly. The goal of the Carter Centers is to learn as much as possible about patients afflicted with HPE and their families in order to improve lives and conquer this disorder. 

Neuro Stories 

Pacific Neuroscience Institute

The Pacific Neuroscience Institute provides state-of-the-art care with a focus on minimally invasive surgical and interventional techniques, as well as novel targeted therapies that aim to restore and maintain quality of life. In collaboration with the Saint John’s Cancer Institute, PNI is also focused on translational research and clinical trials as well as fellowship education and continuing medical education. Our physicians work side by side with our scientists to formulate real-time personalized treatments and therapies for our patients ensuring that they are receiving the highest and most advanced levels of care. 

American Brain Foundation

The American Brain Foundation promotes and invests in research across the whole spectrum of brain disease. Utilizing a whole-brain approach gives us an edge in understanding and combating brain disease. We believe that when we cure one of these diseases, we will cure many. 

Neuro Patient Advocates 

Pediatric Brain Tumor Foundation

The Pediatric Brain Tumor Foundation® is committed to leading the way toward a future without childhood cancer. Thousands of families turn to us each year and find the resources and community support they need on their cancer journey. 

American Brain Coalition

The vision of the American Brain Coalition is to improve the live of all people affected by brain diseases and conditions. 

Mental Health & Behavioral Disorders 

Mental Health Disease Research Organizations 

Brain & Behavior Research Foundation

The Brain & Behavior Research Foundation is committed to alleviating the suffering caused by mental illness by awarding grants that will lead to advances and breakthroughs in scientific research. The Brain & Behavior Research Foundation is the nation’s top non-governmental funder of mental health research grants. 

One Mind

One Mind accelerates collaborative research and advocacy to enable all individuals facing brain health challenges to build healthy, productive lives. We fund research from promising scientists who can potentially make a direct impact in the brain health space. Many of the researchers funded by One Mind have become leaders in the field, generating breakthroughs that make a real difference in the lives of people with mental health challenges. 

Mental Health Disease Stories 

Anxiety & Depression Association of America

ADAA works to prevent, treat, and cure anxiety disorders and depression. ADAA improves the quality of life for those who suffer through evidence-based educational resources, professional practice, and scientific research. ADAA’s promise is to raise awareness about the impact of mental health on physical health, to find new treatments, and one day prevent and cure anxiety, depression, OCD, PTSD, and co-occurring disorders. 

National Alliance on Mental Illness

NAMI is an alliance of more than 600 local affiliates who work in your community to raise awareness and provide support and education that was not previously available to those in need. NAMI works to educate, support, advocate, listen and lead to improve the lives of people with mental illness and their loved ones. 

Mental Health Disease Patient Advocates 

Mental Health America

Mental Health America advances the mental health and well-being of all people living in the U.S. through public education, research, advocacy and public policy, and direct service. Mental Health America is the nation’s leading national nonprofit dedicated to the promotion of mental health, well-being, and illness prevention. Our work is informed, designed, and led by the lived experience of those most affected. 

National Alliance on Mental Illness

NAMI is an alliance of more than 600 local affiliates who work in your community to raise awareness and provide support and education that was not previously available to those in need. NAMI works to educate, support, advocate, listen and lead to improve the lives of people with mental illness and their loved ones. 

Pediatric Diseases 

Pediatric Research Organizations 

ABS Kids

ABS Kids works with children and families affected by Autism Spectrum Disorder (ASD) to reach breakthroughs. Whether it be from home or one of our centers, ABS Kids provides autism diagnosis, individualized planning, one-on-one treatment, and community integrations to support you and your child every step of the way. 

Nationwide Children’s

At Nationwide Children’s Hospital, we aspire to create the best outcomes for children everywhere. This means families come to Nationwide Children’s from around the globe knowing they will get the highest quality care. It means we will reach to cure rare diseases. It means we will sequence a child’s tumor to select the best care pathway. It means we will strive to make an entire population healthier, not just through their physical health, but also in their mental health. It means we will redefine the role of the children’s hospital in the achievement of optimal health. 

Stanley Manne Children’s Research Institute

The mission of Stanley Manne Children’s Research Institute at Ann & Robert H. Lurie Children’s Hospital of Chicago is to generate new knowledge and translate advancements in the prevention, diagnosis, and treatment of diseases that affect children’s health through adolescence and adulthood. Our multidisciplinary teams are committed to making discoveries that will improve the lives of children and their families.  

Pediatric Stories 

Children’s Hospital of Philadelphia

Children’s Hospital of Philadelphia (CHOP) is the nation’s first hospital devoted exclusively to the care of children. Built on a foundation of delivering safe, high-quality, family-centered care, the Hospital has fostered medical discoveries and innovations that have improved pediatric healthcare and saved countless children’s lives. 

Riley Children’s Health

Riley Children’s Health is Indiana’s largest and most skilled pediatric system, with over 50 locations across the state. As one of the nation’s leading healthcare networks specifically for children, our multidisciplinary team of pediatric primary care and specialists can deliver and coordinate healthcare for every child because we have expertise in all areas of pediatric health. 

Pediatric Patient Advocates 

Pediatric Brain Tumor Foundation

The Pediatric Brain Tumor Foundation is committed to leading the way toward a future without childhood cancer. Because of supporters’ generosity, advocacy, and encouragement, thousands of families turn to us each year and find the resources and community support they need on their cancer journey. 

Rare Kids Network

Our mission is to provide resources, advocacy and support for children with rare, life threatening illnesses. We help children attain better quality of life by providing individualized outpatient services. 

Little Miss Hannah Foundation

The Little Miss Hannah Foundation’s mission is to help enhance the quality of life for young children diagnosed with rare, life-limiting, or undiagnosed complex medical needs, as well as children who have been placed in hospice or palliative care. The foundation also gives parents the necessary tools and financial assistance to empower them to meet their child’s unique medical and lifestyle needs, as well as provide support resources and special attention for their other children. We also work to provide support groups for all members of the family by providing fun, family-focused and sibling-focused events and activities. 

Rare Diseases 

Rare Disease Research Organizations 

Global Genes

Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf. 

NORD

As patients, family members, clinicians and researchers, we are united by a single purpose — solve the greatest challenges and unmet needs in rare disease patient care, treatment and research. NORD is a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported and connected. We’re a full-service, mission-driven nonprofit reimagining a future where every person with a rare disease and their families live their best lives. 

EURORDIS

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organizations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. 

Rare Disease Stories 

Rare Genomics Institute

Rare Genomics Institute (RG) is committed to filling the unmet needs of patients and families affected by rare diseases. Together, we introduce patients to next-generation sequencing, digital health researchers, and innovative medical devices. RG also partners with foundations and companies to provide technology grants (BeHEARD) and bioinformatics research. 

NORD

As patients, family members, clinicians and researchers, we are united by a single purpose — solve the greatest challenges and unmet needs in rare disease patient care, treatment and research. NORD is a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported and connected. We’re a full-service, mission-driven nonprofit reimagining a future where every person with a rare disease and their families live their best lives. 

Rare Disease Patient Advocates 

Rare Patient Voice

Rare Patient Voice empowers patients and family caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives. Our vision is to include the patient voice in research and ultimately improve the lives of patients everywhere. 

EURORDIS

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organizations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. 

Know Rare

Know Rare is a rare disease support platform made by people with rare disease to help connect with Rare Allies, provide materials to help track, communicate, and connect with health care providers, caregivers, and loved ones; and learn how to manage day to day life better. 

Renal Disease (Kidney Care) 

Renal Disease Research Organizations 

Renal Disease Research Institute

RDRI’s mission is to offer individuals the opportunity to participate in clinical research by managing scientifically feasible and ethical clinical trials. 

National Kidney Foundation

Fueled by passion and urgency, National Kidney Foundation is a lifeline for all people affected by kidney disease. As pioneers of scientific research and innovation, NKF focuses on the whole patient through the lens of kidney health. Relentless in our work, we enhance lives through action, education and accelerating change. 

Tufts Medicine

Tufts Medical Center is an internationally-respected academic medical center – a teaching hospital where we pride ourselves not only in the sophistication of the care we provide but the compassionate way in which we provide it. We care for all patients from the tiniest newborns to centenarians. 

Renal Disease Stories 

Neph Cure

NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. Founded by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney disease. 

National Kidney Foundation

Fueled by passion and urgency, National Kidney Foundation is a lifeline for all people affected by kidney disease. As pioneers of scientific research and innovation, NKF focuses on the whole patient through the lens of kidney health. Relentless in our work, we enhance lives through action, education and accelerating change. 

PKD Foundation

PDK Foundation is an organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD). We fund research, education, advocacy, support, and awareness on a national and local level. We fund basic and clinical research, nephrology fellowships, and scientific meetings with a simple goal: to discover and deliver treatments and a cure for PKD. 

Renal Disease Patient Advocates 

Renal Support Network

RSN’s hopeful and life-enriching, non-medical programs help people who have kidney disease and their families, whether they are in the early stages of the disease, are on dialysis, or have received a transplant. RSN is the leader in engaging people who have kidney disease with the most prolific library of patient experiences. 

American Kidney Fund

The American Kidney Fund fights kidney disease on all fronts as the nation’s leading kidney nonprofit. We work on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease — from prevention through post-transplant living. 

PKD Foundation

PDK Foundation is an organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD). We fund research, education, advocacy, support, and awareness on a national and local level. We fund basic and clinical research, nephrology fellowships, and scientific meetings with a simple goal: to discover and deliver treatments and a cure for PKD. 

Respiratory Diseases 

Respiratory Research Organizations 

The Lundquist Institute

Our commitment is to improve the quality and duration of life for those suffering from chronic respiratory disease. Through research sponsored by National Institutes for Health (NIH), industry, foundations, and our investigators, we partner with healthcare providers and study participants to improve patient outlook. 

NIH

The National Heart, Lung, and Blood Institute (NHLBI) conducts and supports research that expands our understanding of lung biology and how lung diseases start and progress, as well as studies and clinical trials that lead to new and improved ways to diagnose, treat, and prevent lung diseases. 

American Lung Association

The American Lung Association’s mission is to save lives by improving lung health and preventing lung disease. We do this through education, advocacy, and research. 

Respiratory Stories 

American Lung Association

The American Lung Association’s mission is to save lives by improving lung health and preventing lung disease. We do this through education, advocacy, and research. 

The LAM Foundation

The LAM Foundation Community is an open group where LAM patients, families, friends, physicians, and researchers learn more about lymphangioleiomyomatosis (LAM) and talk about what’s happening in the LAM Community. We discuss raising awareness, fundraising, publications, breaking news, related stories, and share our ideas – anything that is productive for progress in the fight against LAM. 

Pulmonary Fibrosis Foundation

The mission of the Pulmonary Fibrosis Foundation is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and health care providers. 

Respiratory Patient Advocates 

Ella Balasa, speaker

Ella Balasa is passionate about amplifying the patient voice in healthcare. Having a background in biology, I’ve experienced both sides of the research spectrum – as a patient and a scientist.  Examining antibiotic resistant bacteria in the environment, which is the same bacteria that thrive in the lungs of those with CF, my work in the lab intersected with my health. This fueled my interest in involving myself in a research capacity on committees and advisory roles with organizations providing a patient perspective and promoting patient centricity. 

Respiratory Health Association

Respiratory Health Association’s mission is to prevent lung disease, promote clean air and help people live better through education, research, and policy change. Today we address asthma, COPD, lung cancer, tobacco control and air quality with a comprehensive approach. 

Blood Diseases (hematology, anemia and others) 

Blood Disease Research Organizations 

ASH Research Collaborative

ASH Research’s mission is fostering high-quality, equitable care, transformative research, and innovative education to improve the lives of patients with blood and bone marrow disorders. 

Leukemia & Lymphoma Society

The Leukemia & Lymphoma Society (LLS) is a global leader in the fight against blood cancer.  LLS is at the forefront of the fight to cure blood cancer. We are the largest nonprofit dedicated to creating a world without blood cancers. Since 1949, we’ve invested more than $1.6 billion in groundbreaking research, pioneering many of today’s most innovative approaches. 

Foundation for Women & Girls with Blood Disorders

The Foundation for Women & Girls with Blood Disorders works to ensure all women and girls with blood disorders are correctly diagnosed and optimally managed at every life stage. FWGBD raises awareness and educates key healthcare professionals, translates and disseminates information and research, nurtures future healthcare leaders, and fosters collaboration and generates knowledge among core disciplines. 

Blood Disease Stories 

St. Jude Children’s Research Hospital

St. Jude is leading the way the world understands, treats and defeats childhood cancer and other life-threatening diseases. The mission of St. Jude Children’s Research Hospital is to advance cures, and means of prevention, for pediatric catastrophic diseases through research and treatment. Consistent with the vision of our founder Danny Thomas, no child is denied treatment based on race, religion or a family’s ability to pay. 

Stanford Blood Center

Stanford Blood Center leads the fields of transfusion and transplantation medicine by advancing science and technology. We provide hope for the future by teaching the medical leaders of tomorrow. We enhance lives by connecting donors to patients every day. 

National Blood Clot Alliance

NBCA works on behalf of people who may be susceptible to blood clots, including, but not limited to, people with clotting disorders, atrial fibrillation, cancer, traumatic injury, and risks related to surgery, lengthy immobility, child birth and birth control. NBCA accomplishes its mission through programs that build public awareness, educate patients and healthcare professionals, and promote supportive public and private sector policy. 

Blood Disease Patient Advocates 

Cure Sickle Cell

The Cure Sickle Cell Initiative is a collaborative, patient-focused research effort designed to accelerate promising genetic therapies to cure sickle cell disease. The Initiative considers non-traditional ways to advance research and brings together the sickle cell disease (SCD) community—patients, advocates, caregivers, providers, researchers, industry, and others. 

National Hemophilia Foundation

The National Hemophilia Foundation (NHF) is dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive. 

American Society of Hematology

ASH Research’s mission is fostering high-quality, equitable care, transformative research, and innovative education to improve the lives of patients with blood and bone marrow disorders.