2018 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, policymakers 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.

Mission:

The mission of the RARE Corporate Alliance is to blend 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:

Membership is open to pharmaceutical and biotech companies, industry and academia. Associate membership is available for payers, policymakers and regulatory agencies.

Committees:
  • 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

Abeona
Acer Therapeutics
Aeglea BioTherapeutics
Agility Clinical
Agios Pharmaceuticals
Akcea Therapeutics
Alnylam Pharmaceuticals
Amicus Therapeutics, Inc.
Atlantic Research Group (ARG)
Audentes Therapeutics, Inc.
AveXis
Avrobio
Backpack Health
Biogen Idec
BioMarin Pharmaceutical Inc
Bluebird Bio
Boehringer Ingelheim
BridgeBio
Cambridge BioMarketing
Catalyst Pharma
Clementia Pharmaceuticals
Codexis
Continuum Clinical 
Counsyl
Discovery USA
Dohmen Life Science Services
Eloxx Pharmaceuticals
Engage Health
Enzyvant
Feinstein Kean Healthcare
Genentech
Gensight Biologics
Harris Consultants
Harmony Biosciences, LLC
Healthcare at Home (Sciensus)
Horizon Government Affairs
Horizon Pharma
Illumina
Inozyme
Insmed Incorporated
Intercept Pharmaceuticals
Invitae
JF Campbell Consultants, LLC
Leadient Biosciences, Inc.
Leo Pharma
Lumos Pharma
Mallinckrodt Pharmaceuticals
Marinus Pharmaceuticals
MeiraGTx
MME/Medical Marketing Economics
Novartis Pharmaceuticals Corporation
Ovid Therapeutics
Pfizer Inc.
PRA Health Sciences
Progenics Pharmaceuticals
PTC Therapeutics
Recordati Rare Diseases Inc
Regeneron Pharmaceuticals, Inc
REGENXBIO
Retrophin
Sanagamo Therapeutics
Sanofi-Genzyme
Seeker Health
Shire
Sobi
Spark Therapeutics 
Strongbridge BioPharma
Ultragenyx Pharmaceutical
Vertex Pharmaceuticals Inc.
Wendy White Consulting