One Rare Voice.
We are the Rare Disease Company Coalition. We represent life science companies committed to discovering, developing, and delivering rare disease treatments for the patients we serve. Our goal is to inform policymakers of the unique challenges—and promises—we face in taking these rare disease drugs from research through development, approval and manufacturing and to advocate for government policies that enable positive changes to be realized for the rare disease community.
The time is now.
~10K
Rare diseases and growing – Yet the average duration for a rare disease diagnosis is 7-8 years, and 50% of patients must live with no accurate diagnosis.
70%
Progress in motion – 70% of the nearly 3,000 therapies in phase III clinical trials are from small pharmaceutical companies.
5%
The need is critical – Only 5% of rare diseases have an FDA-approved treatment.
1:10
Rare is not that rare – One in ten people lives with a rare disease and half are children.
58%
We are invested – On average, 58% of our annual expenditures go to research and development.
>200
Hope is there – Our members collectively have more than 200 rare disease development programs in progress.
See our growing coalition of rare disease companies.
Learn more.
The Rare Disease Company Coalition helps educate key policy stakeholders on the unique considerations of life science companies when developing and bringing to market therapies for small and differentiated patient populations. If you are a life science company dedicated to rare diseases and interested in joining us, please contact info@rarecoalition.com.
If you are a member of the media interested in learning more about the Rare Disease Company Coalition, please contact us at media@rarecoalition.com.
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Learn more about the unique challenges in rare disease treatment development, and why one-size-fits all approaches to healthcare policy reform are harmful to continued investment and innovation for rare disease treatments.