Patients, families and advocacy groups know their disease better than anyone.
Patient advocacy groups play a key role in helping Cydan identify potential collaborators, innovators and novel potential therapies for rare diseases. Rare disease patient groups can connect researchers to their disease and provide seed funding to their labs to explore new ideas, creating a rich environment of innovation to advance therapies in their disease area. They sometimes lack the financial resources and development expertise to advance out of the lab and into patients- Cydan does. Patient groups in addition provide an invaluable connection between companies like Cydan, thought leaders in their rare disease and the patients and families living with rare diseases.
Cydan values patient groups and the critical role they play in developing orphan drugs.
Cydan as a member of this community, welcomes the opportunity to be an educational and development resource for all rare disease groups. Together we will ask the tough questions and help find a path to get the answers.
“Our organization and I have been working with Cydan since its inception and were working with members of the current Cydan management team well before Cydan was launched in 2013. Without hesitation or reservation, I would recommend that other organizations consider collaborating with the company! It is crystal clear to us that the Cydan team is just like us – totally committed to improving the lives of rare disease patients; all in, all together, all the time!”
Ron Bartek, Co-Founder/Founding President
Friedreich’s Ataxia Research Alliance (FARA)
Rare Disease Organizations / Patient Resources
There are hundreds of patient advocacy groups and charitable foundations established to support individual rare disease communities. Below are a few umbrella organizations:
- Genetic Alliance
- International Rare Diseases Research Consortium (IRDiRC)
- National Organization for Rare Disorders, Inc. (NORD)
There are many government agencies and international resources focused, at least in part, on rare diseases and orphan drugs:
- European Medicines Agency (EMA)
- European Union Committee of Experts on Rare Diseases (EUCERD)
- Institut national de la santé et de la recherche médicale (Inserm)
- National Institutes of Health (NIH)
- Office of Rare Diseases Research / National Center for Advancing
Translational Sciences (ORDR/NCATS)
- U.S. Food and Drug Administration (FDA)