Rare Disease Company Coalition Inc
Home - Rare Coalition
862999172
2021
Washington, DC 20001 United States
rarecoalition.com
RareCoalition
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Novinky
September is Newborn Screening Awareness Month! This proven public health program detects serious genetic conditions in newborns. We call on policymakers to modernize newborn screening to keep pace with #raredisease innovation. Learn more: https://t.co/9YDR7yqsep https://t.co/ClGIN69tCt (tw)
The Priority Review Voucher program is a lifeline for the #raredisease community and can be the difference between life and death. Meg Didier, a patient and advocate, knows this urgency firsthand. The PRV program is her source of hope and a step toward finding treatments. https://t.co/8PFvMEATDq (tw)
Poslední komentáře
🌟 So inspired by the work you all are doing! Every effort counts in the journey towards better treatments for those battling rare diseases. Together, we can amplify #OneRareVoice! 💪💜detail |
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👏 Thank you for advocating for the rare disease community! It's time to raise awareness and push for the policies that can make a real difference in the lives of patients and their families. Let's keep the momentum going! 🌍✨detail |
Poslední diskuze
What strategies can the Rare Disease Company Coalition employ to better engage policymakers and the public on the challenges faced by patients with rare diseases?Odpovědí: 3, Naposledy před 1 den detail |
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How can the coalition leverage partnerships with patient advocacy groups to enhance awareness and support for rare disease therapies?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
25
4.5
Washington
O společnosti
- B01 -
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 challengesand promiseswe face in taking these rare disease drugs from research through development approval and manufacturingand to advocate for government policies that enable positive changes to be realized for the rare disease community.
Aliance a organizace na podporu zájmů
