Based at Sanford Research, a nonprofit research institution, CoRDS is a centralized international patient registry for all rare diseases.
The Healthcare Navigation Project
The Healthcare Navigation Project INC is a comprehensive life skills program which helps to bridge the healthcare gap and create healthcare equity, by providing support and education to navigate the complexities of the healthcare system. They empower underserved communities, individuals with chronic diseases, and those with educational disabilities to access essential healthcare, mental health services,
SDFund
SDFund
Team Impact
Team Impact
Rare Rev Youth
Rare Rev Youth
Rare Rev
RareRev
The Fred Project
The Fred Files
The Dash Alliance
The Dash Alliance works to support patients and families living with a rare disease diagnosis. DASH (Digital Assets Supporting Health) is more than our name, it’s at the heart of what we do. At Dash, we know that collaboration is the key to developing supportive rare disease communities. That’s why we work with patients, families,
Cystic Fibrosis Engagement Network (CFEN)
The Cystic Fibrosis Engagement Network (CFEN) serves as a leading educational and advocacy organization focused on policy matters impacting cystic fibrosis patient access to optimal care. CFEN is made up of member organizations from across the United States. Together, we hope to affect real change for the CF community. Click the CFEN logo to get
Emilys Entourage
Emily’s Entourage is an innovative 501(c)3 that accelerates research for people in the final 10% of the cystic fibrosis (CF) population that do not benefit from existing CFTR modulators. Since 2011, Emily’s Entourage has awarded millions of dollars in research grants, launched a now-acquired CF gene therapy company, developed a patient registry and clinical trial