🎨✨ Exciting news! We’ve extended the Rare Artist contest deadline through the weekend! 🎨✨ You now have through Sunday, September 15 to submit your powerful, creative pieces. Don’t miss this chance to share your rare story through art and make your voice heard in the rare disease community! Enter at https://hubs.li/Q02PQGn50
EveryLife Foundation for Rare Diseases
Public Policy Offices
Washington, District of Columbia 10,699 followers
The EveryLife Foundation for Rare Diseases educates, supports and amplifies the voice of rare disease patient advocates.
Über uns
We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.
- Website
-
http://everylifefoundation.org
External link for EveryLife Foundation for Rare Diseases
- Industrie
- Public Policy Offices
- Größe des Unternehmens
- 11-50 Mitarbeiter
- Hauptsitz
- Washington, District of Columbia
- Typ
- Nonprofit
- Gegründet
- 2009
- Spezialitäten
- Advocacy, Patient Engagment, Rare Diseases, and Public Policy
Standorte
-
Primäre
1012 14th Street NW, Suite 500
Washington, District of Columbia 20005, US
Employees at EveryLife Foundation for Rare Diseases
Aktualisierungen
-
📢 Advocacy in Action: Today the The National Academies of Sciences, Engineering, and Medicine (NASEM) released, Regulatory Processes for Rare Disease Drugs in the United States and European Union: Flexibilities and Collaborative Opportunities. This key report provides recommendations for enhancing and promoting rare disease drug development, advancing regulatory science, and fostering collaboration between FDA and the European Medicines Agency. Today’s report is the yield of our rare disease community’s advocacy in action. Commissioned by Congress following advocacy by our community and conducted by a Committee inclusive of rare disease patient community experts. 🔗 Access the report and additional resources on the project webpage here: https://lnkd.in/e6qnnUNi
-
⏰ We need your support to pass the Creating Hope Reauthorization Act (H.R. 7384/S. 4583) to protect the Rare Pediatric Disease Priority Review Voucher (PRV) Program. This life saving program expedites the development and promotion of treatments for rare pediatric diseases. How the PRV Program Works: 👉Incentivizes drug companies to develop treatments for rare pediatric diseases – at no cost to taxpayers. 👉After FDA approval of a new treatment, the company receives a PRV for faster FDA review of another treatment. 👉Priority review speeds up the process from 10 months to 6 months! Learn more and take action: https://lnkd.in/gyQJv_K3 (Scroll down to the 5th action alert) #Cures4RareKids #PRV #raredisease #pediatric #policy
Take Action - EveryLife Foundation for Rare Diseases
https://everylifefoundation.org
-
Wrapping up an enlightening Rare Disease Congressional Caucus briefing on "Innovating and Strengthening the Newborn Screening Program" as part of Newborn Screening Awareness Month. A huge thank you to our speakers Erica Barnes, Dylan Simon, Dennis Dietzen, Amy Gaviglio, Duane Clark and to our Rare Disease Caucus Co-Chairs, Senator Amy Klobuchar and Representative Gus Bilirakis, as well as all of the attendees. #raredisease #congressionalcaucus #nbs2024
-
+3
-
**PA rare disease advocates, it's the LAST DAY to register for Rare Disease State Advocacy Day!** Meet with legislators, share your stories, and push for important policy changes. No experience needed—just bring your passion! 🌟💪 Register by **today, September 10th**! Click the link below: https://lnkd.in/dbU78Mpr
-
Happening NOW! Join us for the Rare Disease Congressional Caucus Briefing: "Innovating and Strengthening the Newborn Screening Program" Watch livestream here: https://lnkd.in/eEJ3Yrky #newbornscreening #caucusbriefing
-
EveryLife Foundation for Rare Diseases reposted this
Come join our team and make change happen with and for rare disease patients and families!
-
Join us at the forefront of change! 🌟 In honor of Newborn Screening Awareness Month, our next Rare Disease Congressional Caucus briefing will be about innovating and strengthening the newborn screening program. Be a part of this important conversation! Speakers include: -Duane Clark, General Manager, Rare Disease, Sanofi -Erica Barnes, Executive Director, MN Rare Disease Advisory Council -Dennis Dietzen, Ph.D., Former President, Association for Diagnostics and Laboratory Medicine -Amy Gaviglio, MS, CGC, Public Health Genetics and Genomics Consultant, Connectics Consulting -Dylan Simon, Senior Director of Policy, EveryLife Foundation for Rare Diseases Click the link to register: https://lnkd.in/e_gm5rFN
-
Newborn screening legislation is essential to ensuring that all children receive the critical diagnosis care they need. As the FOX6 Milwaukee, WITI-TV article points out, the need for improvements is urgent. The EveryLife Foundation remains committed to advancing this life-saving policy in the next legislative session. https://lnkd.in/eyE5BEDx To learn more visit the EveryLife Foundation's newborn screening action center: https://lnkd.in/ez4CduDj #NewbornScreening #RareDisease #LegislativeAction #Wisconsin #nbs2024
Newborn screening: Wisconsin 'falling behind' federal guidelines
fox6now.com
-
❗ Reminder!! Today is the last day to register to be eligible for travel reimbursements! 🗣
📣 Calling all rare disease advocates in Pennsylvania! Join us for Rare Disease State Advocacy Day to meet with PA state legislators, share your stories, and push for vital policy changes. This is your chance to make a real difference in healthcare policies that affect diagnosis, treatment, and access to care. No prior experience needed—just bring your voice and passion for change! 🌟💪 Registration is open now until September 10th. Click the link below to register. https://lnkd.in/dbU78Mpr