What keeps you moving? At the EveryLife Foundation, we believe that every story, every action, and every voice moves the rare disease community forward. As part of our EveryLife, Every Action year-end campaign, we’re creating a community word cloud to highlight the challenges

The EveryLife, Every Action year-end campaign highlights how advocacy, evidence-based policy, and community partnerships fuel momentum even in challenging times. Visit our campaign page to learn more and hear advocates' stories: https://t.co/sIKKPVrV6X

BREAKING: Gavin Newsom officially considers 2028 presidential campaign. 22% chance he’s the next POTUS.

While we do not know when the federal government will reopen, we do know that the need for rare disease therapy momentum grows more intense with each passing day. The Pediatric PRV program brings hope for children with rare diseases, and we must keep moving forward — no matter

📅 This week, the EveryLife Foundation attended the @APHL Newborn Screening Symposium, which brought together hundreds of professionals working in every aspect of newborn screening. Thank you to everyone who stopped by our exhibition booth to learn about the importance of newborn

⁉️ 𝗪𝗵𝗮𝘁 𝗱𝗼𝗲𝘀 𝘁𝗵𝗲 𝗙𝗲𝗱𝗲𝗿𝗮𝗹 𝗚𝗼𝘃𝗲𝗿𝗻𝗺𝗲𝗻𝘁 𝗦𝗵𝘂𝘁𝗱𝗼𝘄𝗻 𝗺𝗲𝗮𝗻 𝗳𝗼𝗿 𝘁𝗵𝗲 𝗿𝗮𝗿𝗲 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆? To learn more about how each agency will be impacted and what the shutdown means for the rare disease community, click the

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The EveryLife Foundation is hiring for the position of Vice President of Patient Community Engagement to help advance our mission of leading innovation in rare disease policy and advocacy. We are seeking a bold, empathetic, and strategic leader to own and drive our Patient

📢The House Committee on Energy and Commerce voted to advance the Give Kids a Chance Act, which would reauthorize the Rare Pediatric Disease PRV Program for 5 years! This markup signifies essential progress for the rare disease community, but more action is needed to restore and

Happening this week! It's not too late to register for our upcoming virtual Newborn Screening Bootcamp on September 17 at 12 PM ET in collaboration with @ExpectHealthOrg! This event provides an opportunity to learn about the latest developments in newborn screening from

Today, @RareAdvocates hosted the latest Rare Disease Congressional Caucus Briefing. The briefing focused on regulatory urgency and therapeutic opportunity in the drug approval process. Our amazing guest speakers came from different areas of the rare disease community to share

📢 The EveryLife Foundation for Rare Diseases is honored to co-lead a large coalition of patient advocacy organizations in urging Congress to pass the Give Kids a Chance Act. Now is the time to renew the Rare Pediatric Disease Priority Review Voucher Program. Congress can

Louisiana rare disease patient advocate Jakeel Abdullah knows the Priority Review Voucher  Program isn’t about just one disease - it’s about giving ALL rare pediatric patients a chance. The #PRV expired last year, leaving rare patients without a trajectory of treatment. Tell

‼️What to Know From the RISE Conference 📢 During the On The RISE Conference, hosted by @DukeMargolis Institute for Health Policy, the @US_FDA announced the new Rare Disease Evidence Principles (RDEP) to streamline the review of therapies. These are intended to treat rare

📷 Today, the EveryLife Foundation’s Chief of Policy, Advocacy, and Patient Engagement, Annie Kennedy, is thrilled to be speaking at the On The RISE Conference, hosted by the @DukeMargolis Institute for Health Policy. Annie will join the Session 4 Panel, “Where Do We Go From

‼️The House released the FY 26 Labor, HHS funding bill that started markup yesterday. The bill includes $48.7 billion for the NIH, and $928.3 million for NCATS, but proposes cuts to key public health agencies. The Everylife Foundation for Rare Diseases, alongside others at

September is Newborn Screening Awareness Month, and we have a full calendar of opportunities for you to learn and engage! 📅 Sep. 12: Newborn Screening Evidence Review Workshop – Presentation and discussion of completed evidence reviews for Duchenne and MLD. 📅 Sep. 17:

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