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.
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.
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.
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.
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 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.
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.
Information, resources, and community for those affected by a wide range of rare diseases. 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.