The RARE Corporate Alliance is a collection of rare disease stakeholders committed to facilitating collaboration and an information exchange among patients, patient advocacy organizations, health-related organizations, industry, payers, policy makers and regulatory agencies.
Only with all stakeholders at the table with an open, cooperative “we-can” spirit, will we effectively address issues facing the rare disease community.
The mission of the RARE Corporate Alliance is to marry the resources and capabilities of industry and patient communities to improve and expedite health access to effective therapies for all patients with rare diseases.
Membership is open to pharmaceutical and biotech companies, industry and academia. Associate membership is available for payers, policy makers and regulatory agencies.
- Patient Education
- Mission: To support the rare disease community in forming, collaborating, mobilizing and being the most effective in their advocacy and engagement efforts.
- Healthcare Professional Education
- Mission: To develop a better understanding of the reasons for delayed diagnosis and treatment of rare diseases, creating strategies and tactics to shorten the time to it.
- Patient Access
- Mission:To educate the rare disease community on the details behind reimbursement/pricing for approved rare disease treatments.
RARE Corporate Alliance – Members
Amicus Therapeutics, Inc.
Athena Diagnostics, Inc.
Audentes Therapeutics, Inc.
BIO Biotechnology Innovation Organization
BioMarin Pharmaceutical Inc
Cincinnati Children’s Hospital Medical Center
Dohmen Life Science Services
Feinstein Kean Healthcare
Healthcare at Home (Sciensus)
Idis Managed Access
Ionis Pharmaceuticals, Inc.
Marathon Pharmaceuticals, Llc.
MME/Medical Marketing Economics
Novartis Pharmaceuticals Corporation
PRA Heath Sciences
Raptor Pharmaceutical Corp.
Recordati Rare Diseases Inc
Sigma Tau Pharmaceuticals, Inc.
Vanda Pharmaceuticals, Inc.
Vertex Pharmaceuticals Inc.