🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

New Year, New Opportunities to Advocate! Join us this February to make your voice heard on Capitol Hill. Rare Disease Week is your chance to connect with lawmakers and champion policies that matter to YOU and the rare disease community. Register here: hubs.li/Q033ZxP80

25 advocates from Richmond, VA, met with state legislators for Rare Disease State Advocacy Day, pushing for RUSP legislation, prior authorization reform & medical debt changes. Thank you to everyone who joined for your support! Take action in your state: hubs.li/Q034VgFr0

📣 Calling all rare disease community members. Join a petition to Congress in honor of #RareDC2025 🗣️ On behalf of our nation’s rare disease community, this petition urges Congress to continue their support of steady and robust federal agency leadership, federal biomedical

Click the link in this tweet to join our petition to Congress in honor of #RareDC2025 🖊️

We are 30 million Americans strong! Urge Congress to continue their support of steady and robust federal agency leadership, federal biomedical research funding, and public health agency resources. ✍📨 Sign and share! everylifefoundation.quorum.us/campaign/11175…

Advocates, in honor of each of the 10,000 rare disease communities served by the biomedical research and public health ecosystem, please help us cross the threshold by signing this petition! Only 1,000 more signatures to reach our goal! everylifefoundation.quorum.us/campaign/11175…

Calling all rare disease advocates with prior advocacy experience! Apply for this free seminar series designed to provide in-depth education and advocacy training, developing a pathway toward year-round advocacy engagement. To learn more and register: everylifefoundation.org/rare-advocates…

Join us for the Share Your Story Webinar, featuring inspiring Rare Artist Awardees and a special workshop with Stephanie Riordan on making postcards for your legislator for a creative advocacy experience. #RareArtist #AdvocacyThroughArt Register here: hubs.ly/Q03cyxqk0

Don’t miss this month's RDLA webinar! Stay ahead on key rare disease policy updates. We’ll cover the latest on budget reconciliation, priority review vouchers, the Accelerating Kids’ Access to Care Act, and the EXPERT Act. Register now at this link: hubs.ly/Q03clGk80

Thank you to the nearly 1,000 advocates who attended Rare Disease Week on Capitol Hill in Washington, D.C. To everyone who joined us—and to those cheering us on from afar—thank you and see you next year! Watch the #RareDC2025 wrap-up video below. youtu.be/kR21ItYmdHg

📢 NJ rare disease advocates! Join us in Trenton on June 2, 2025, for Rare Disease State Advocacy Day! Meet legislators, share your story & shape policy. Register by May 16 Travel reimbursement: April 18 Training: May 19 No experience needed! Register now: hubs.li/Q03gByn50

Calling all young rare disease advocates! RDLA invites youth and teens (ages 10–18) to join our 2nd Virtual Youth & Teen Advocacy Day! You'll meet with Members of Congress, share your story. Register now at the link below: hubs.li/Q03k8dhR0

Hey New Jersey rare disease advocates! Join us in Trenton on June 2nd, 2025, for Rare Disease State Advocacy Day—a day to meet with state legislators, share your story, and help shape rare disease policy. Register by May 16. Click here: hubs.li/Q03kgtvZ0

Registration for Rare Across America 2025 is open! Don't miss the opportunity to meet with your representatives and advocate for issues that are most important to the rare community. #RareAcrossAmerica2025 Register here: hubs.li/Q03m3PJg0

Rare disease advocacy is most successful when advocates work with each other and patient organizations. Join us to learn more about the ways rare disease advocates can be more effective by building coalitions and collaborating. Register here: hubs.li/Q03mdcds0

Happening Today! Let’s talk about Newborn Screening at the Rare Disease Congressional Caucus Briefing. Join us at the Dirksen Senate Office Building, Room G11, Washington, D.C. at 12-1pm ET. To register visit: share.hsforms.com/1zE67FfxvStqay…

"Newborn screening is one of the most successful and cost-effective public health programs. When a condition is found, we must ensure that treatment is available. Children with rare conditions shouldn’t have to wait for the care they need." Senator Amy Klobuchar #CaucusBriefing

Join us live now: share.hsforms.com/1zE67FfxvStqay…

Registration for RDLA' Rare Across America 2025 is officially underway! Don't miss the opportunity to meet with your representatives & advocate for the CMD community by sharing your story. Meetings take place August 4-15, training provided. hubs.li/Q03m3L7_0

📣 𝗥𝗲𝗰𝗼𝗿𝗱𝗶𝗻𝗴 𝗡𝗼𝘄 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲. 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗖𝗼𝗻𝗴𝗿𝗲𝘀𝘀𝗶𝗼𝗻𝗮𝗹 𝗖𝗮𝘂𝗰𝘂𝘀 𝗕𝗿𝗶𝗲𝗳𝗶𝗻𝗴 Speakers discussed the vital role of newborn screening in diagnosing life-threatening conditions early. Watch the recording youtube.com/live/bTwkovZbw…