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.
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.
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.
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.
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.
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.
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 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.
This is your chance to make your voice heard when it comes to rare disease research! 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.
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.