2017 RARE Corporate Alliance

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

Agility Clinical
Akcea Therapeutics
Alnylam Pharmaceuticals
Amicus Therapeutics, Inc.
Athena Diagnostics, Inc.
Audentes Therapeutics, Inc.
BIO Biotechnology Innovation Organization
Biogen Idec
BioMarin Pharmaceutical Inc
Bluebird Bio
Boehringer Ingelheim
Cambridge BioMarketing
Catalyst Pharma
Cincinnati Children’s Hospital Medical Center
Clementia Pharmaceuticals
CONNEXION Healthcare
Discovery USA
Dohmen Life Science Services
Engage Health
Feinstein Kean Healthcare
GlaxoSmithKline (GSK)
Healthcare at Home (Sciensus)
Horizon Pharma
Idis Managed Access
Insmed Incorporated
Intercept Pharmaceuticals
Ionis Pharmaceuticals, Inc.
Janssen Labs
LapidusData Inc.
Lilly USA
Lumos Pharma
Mallinckrodt Pharmaceuticals
Marathon Pharmaceuticals, Llc.
MME/Medical Marketing Economics
Novartis Pharmaceuticals Corporation
PRA Heath Sciences
Pfizer Inc.
PTC Therapeutics
Raptor Pharmaceutical Corp.
Recordati Rare Diseases Inc
Sigma Tau Pharmaceuticals, Inc.
Spark Therapeutics
Strongbridge BioPharma
Teva Pharmaceuticals
Ultragenyx Pharmaceutical
Vanda Pharmaceuticals, Inc.
Vertex Pharmaceuticals Inc.