The Rare Disease Company Coalition

@RareCoalition

We are a coalition of life science companies committed to discovering, developing & delivering rare disease treatments for the patients we serve. #OneRareVoice

Washington, DC

Joined April 2021

344Following

527Followers

The Rare Disease Company Coalition@RareCoalition · Jul 24

The ORPHAN Cures Act is a life-saving policy that will spur needed innovation and investment in #raredisease treatment. We are thrilled by its passage and will continue to advance policies that benefit patients and biotechnology companies. Read more: wsj.com/articles/a-bri…

RareCoalition's tweet card. Folded into the blockbuster law that passed this month was the Orphan Cures Act, a measure that spares drugs approved for more than one orphan disease from Medicare price negotiation.

The Rare Disease Company Coalition@RareCoalition · Jul 17

Leaders from RDCC member companies, including @Neurocrine, @BridgeBioPharma, and @Stoketx, were on Capitol Hill this week, advocating for the reauthorization of the PRV program. The PRV program is a proven policy - Congress must act now to pass the Give Kids a Chance Act.

RareCoalition's tweet image. Leaders from RDCC member companies, including @Neurocrine, @BridgeBioPharma, and @Stoketx, were on Capitol Hill this week, advocating for the reauthorization of the PRV program.

The PRV program is a proven policy - Congress must act now to pass the Give Kids a Chance Act.

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The Rare Disease Company Coalition@RareCoalition · Jul 10

RDCC sent a letter to @US_FDA with our vision for a modernized regulatory approach to rare disease. We’re eager to work with the administration to ensure #raredisease remains a priority. Read our letter: rarecoalition.com/wp-content/upl…

The Rare Disease Company Coalition@RareCoalition · Jul 10

.@RepGusBilirakis's op-ed highlights the critical need to reauthorize the PRV program, which has helped develop rare pediatric disease treatments. RDCC thanks Rep. Bilirakis for his leadership & urges Congress to reauthorize this life-saving program. health.policyplatform.news/programs/champ…

The Rare Disease Company Coalition@RareCoalition · Jul 8

Exciting news! Our rare disease coalition is growing with the addition of @Deciphera, a biopharmaceutical company committed to discovering & delivering new medicines for the treatment of cancer. We're thrilled to partner with them to advance #raredisease therapies for patients.

RareCoalition's tweet image. Exciting news! Our rare disease coalition is growing with the addition of @Deciphera, a biopharmaceutical company committed to discovering &amp; delivering new medicines for the treatment of cancer.

We're thrilled to partner with them to advance #raredisease therapies for patients.

The Rare Disease Company Coalition@RareCoalition · Jun 27

RDCC is grateful for @RepKevinMullin’s leadership on critical #raredisease issues. We look forward to continuing our work together to advance policies that benefit patients and biotechnology companies in California’s 15th District and across the country.

RareCoalition's tweet image. RDCC is grateful for @RepKevinMullin’s leadership on critical #raredisease issues.

We look forward to continuing our work together to advance policies that benefit patients and biotechnology companies in California’s 15th District and across the country.

The Rare Disease Company Coalition@RareCoalition · Jun 26

At an Energy and Commerce Committee hearing, @RepGusBilirakis championed the Priority Review Voucher program to HHS Secretary Robert F. Kennedy! RDCC thanks Rep. Bilirakis for his advocacy and urges HHS and the FDA to work with Congress to reauthorize this critical program.

The Rare Disease Company Coalition@RareCoalition · Jun 17

RDCC urges the Senate to reinstate the Orphan CURES Act in its reconciliation package. It is a vital policy that preserves #raredisease innovation. Without it, fewer rare disease therapies will be developed. Read our letter to Senate leadership: rarecoalition.com/wp-content/upl…

The Rare Disease Company Coalition@RareCoalition · Jun 13

The ORPHAN Cures Act is essential to preserving rare disease innovation, and we urge the Senate to retain this vital, bipartisan provision in its reconciliation package. Read our letter to @LeaderJohnThune and Chairman @MikeCrapo below.

RareCoalition's tweet image. The ORPHAN Cures Act is essential to preserving rare disease innovation, and we urge the Senate to retain this vital, bipartisan provision in its reconciliation package.

Read our letter to @LeaderJohnThune and Chairman @MikeCrapo below.

The Rare Disease Company Coalition@RareCoalition · Jun 6

The Priority Review Voucher Program sends a clear message to the #raredisease community: Your lives matter. Meg Didier, a rare disease patient and advocate, calls for the passage of the PRV program. WATCH:

The Rare Disease Company Coalition@RareCoalition · May 28

The ORPHAN Cures Act would be a game-changer for the #raredisease community, removing barriers to innovation and opening the door to promising research. We urge Congress to support this life-changing policy. Learn more about the critical need for action: rollcall.com/2025/05/13/rar…

The Rare Disease Company Coalition@RareCoalition · May 15

.@HouseCommerce passed the ORPHAN Cures Act — a victory for the rare disease community! We thank @RepGuthrie, @RepBuddyCarter, & @RepJohnJoyce for your leadership. The full House must protect the 30 million Americans living with a rare disease by advancing the ORPHAN Cures Act.