Tyler Ordonez hadn't had the opportunity to meet other youth and teen rare disease patient advocates. During the Virtual Youth & Teen Advocacy Day, Tyler met with his Members of Congress and shared his rare disease story. Sign up and give it a shot! bit.ly/3nkT7Oq

During the Health Subcommittee Markup all three bills supported by EveryLife Foundation made critical progress in the legislative process. We're hopeful for swift action by the full committee. Energy and Commerce Committee 🌟 Let's keep the momentum going, calling all young advocates! Don't miss

Registration for #RareAcrossAmerica2024 is open! Connect with your local members of Congress and advocate for the issues crucial to the rare community by sharing your story. Advocacy trainings will be provided. 📅 August 5-16 Register at the link below: hubs.li/Q02C46Xs0

🌟 Don't miss our next webinar this Thursday, June 27th, 2024, 12-1pm ET! Join young advocates and experts from the #raredisease community. Let’s talk youth-focused legislation advocacy! Register here: hubs.li/Q02DgCxh0

Apply now for Rare Giving Sponsorships! Grants support event sponsorships, tools for non-profits, and travel reimbursements for Rare Disease Week and FDA/NIH meetings. Join us in advocating for rare diseases! Apply here: hubs.li/Q02DChP60 #RareGiving #PatientAdvocacy

Before you unplug for the weekend, do you know a rare disease leader or organization who deserves recognition? 🏆✨ Nominate them for a #RareVoiceAward here: hubs.li/Q02HhzK40 #RareVoiceAwards2024

🌟 Do you know any amazing youth or teen advocates who have pushed for state or federal legislation in 2023 or 2024? Nominate them for a RareVoice Award so we can celebrate their incredible work! 🙌✨ Link below: hubs.li/Q02HwjVk0 #RareVoiceAwards2024

✨ Art is a powerful tool in advocacy used spread awareness about their rare disease. Nominate someone who advocates for rare disease awareness or legislation through art for a RareVoice award at the link in below: hubs.li/Q02HZwr00 #RareVoiceAwards2024

⏳ Last chance to nominate for #RareVoice2024! Check out last year's winners and submit your picks by August 16 for those who’ve championed rare disease legislation in 2023 and 2024. 👉 hubs.li/Q02K4BlT0

Thank you Senator Bob Casey for meeting with us today to discuss issues important to those with Rare Diseases.🦓@EverylifeOrg RDLA #Pennsylvania #Medication #Access #MedicalResearch #raredisease

8 more days to nominate somebody for a RareVoice Award! Do you know an individual or patient organization who has advocated for the rare disease community in 2023 or 2024? Nominate them at the link below: hubs.li/Q02KCvDx0

Thank you to our rare disease advocates for a successful first week of Rare Across America 2024 meetings! We look forward to next week as more meetings with representatives get underway. Don't forget to share your photos using the hashtag #RareAcrossAmerica2024!

3 more days until nominations close for #RareVoiceAwards2024 ! Have you made your nominations? Click the link below to nominate. 🌟 hubs.li/Q02L9T_Y0

The last week of #RareAcrossAmerica2024 has come to a close, and what a week it has been! Your meetings with representatives to advocating for rare disease legislation are making a difference. Together, we're paving the way for a better future for those affected by rare diseases.

📣 PA rare disease advocates, join us for Rare Disease State Advocacy Day! Meet with legislators, share your stories, and push for policy changes that matter. No experience needed—just bring your passion! Register by September 10th! Click the link below: tinyurl.com/4zfk5cy9

Thank you to the 425 rare disease advocates from 49 states + D.C. who made their voices heard in 242 Congressional meetings during #RareAcrossAmerica2024 💪 Your advocacy is driving change and bringing hope to countless lives. Together, we're making a difference! 🙌

RDLA's State Advocacy Quarterly Webinar is Thur., 9/12, from 2-3pm ET. Hear from amazing representatives in health policy about the rules requiring patient and caregiver engagement for payer decision making and what this means for advocates. Register here: tinyurl.com/y6mmh9zd

Does your 501(c)3 org. need support for event sponsorships, Patient-Focused Drug Development meetings, or tools to enhance patient advocacy and policy engagement? Rare Giving grants are here to help! Apply now and take your advocacy to the next level! tinyurl.com/yv9p3pf6

September is Newborn Screening Awareness Month! Support for one of the largest public health programs in the U.S. Join us for these events for patient advocates: Caucus Briefing: tinyurl.com/a28d84jt RDLA Webinar: tinyurl.com/y6mmh9zd NBS Bootcamp: tinyurl.com/545vrhje

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! Link to register: tinyurl.com/4hetepzb