The Village, Louisville KY

07/18/2026

Thank you to Celia for raising Loey-Dietz Syndrome awareness and to our friends at Same but Different for shining a light on rare conditions.

https://ow.ly/XkuL50ZontQ

06/13/2026

06/13/2026

Conference won't be the same without YOU!

Register ASAP: https://ow.ly/ITvr50Zb4Eh

06/13/2026

The EveryLife Foundation recently hosted our 15th Scientific Workshop: Making What Matters Count: Advancing Patient-Centered Rare Disease Therapy Development Methodologies, Tools, and Knowledge Management. The workshop brought together a remarkable group of stakeholders for a day of thoughtful discussion, collaboration, and shared commitment to advancing rare disease therapy development.

Since the workshop, our team has been working to synthesize the discussions and identify the most actionable insights and opportunities that emerged. We have begun developing a comprehensive meeting report that will provide a detailed summary of the discussions, recommendations, and next steps. We look forward to sharing that report, along with additional resources and outcomes, in the coming months.

In the meantime, we wanted to share a brief summary of several key themes and priority actions identified during the workshop. The recommended actions are organized around the three major focus areas that guided our discussions: Knowledge Management, Legislative Policy, and Regulatory Policy.

We hope these preliminary takeaways help continue the momentum generated during the workshop and serve as a starting point for ongoing collaboration across the rare disease community.

Read the summary action plan on our website ➡️ https://everylifefoundation.org/events-schedule/scientific-workshop/

06/13/2026

The rare disease community was in the spotlight last week thanks to the power of your advocacy! In case you missed it, here are last week's regulatory and access policy highlights:

➡️ The Acting Commissioner of the Food and Drug Administration (FDA) hosted a Round Table for Rare Disease Community Leaders to discuss rare disease regulatory opportunities. For more details and a summary of the meeting, see our latest newspost: https://everylifefoundation.org/fda-rare-disease-roundtable-june-3-2026/

➡️ Just in time for the FDA Rare Disease Roundtable, the EveryLife Foundation released its Summary Action Report coming out of the 2026 Scientific Workshop: Making What Matters Count: Advancing Patient-Centered Rare Disease Therapy Development Methodologies, Tools, and Knowledge Management. This brief summary includes several key themes and priority actions identified during the workshop, organized around the three major focus areas that guided our discussions: https://everylifefoundation.org/events-schedule/scientific-workshop/

➡️ The Centers for Medicare and Medicaid Services (CMS) officially released the Interim Final Rule: Medicaid Program; Community Engagement Requirement for Certain Individuals to provide guidelines for states implementing work requirements for Medicaid expansion populations. The community has the opportunity to submit comments and help shape the final rule through July 31. Please visit our website for updates and action items as we work to digest this nearly 400-page document, including updates on upcoming webinars and resources: https://everylifefoundation.org/medicaid-interim-final-rule/

We’ll continue to keep the community posted as more information and opportunities to engage become available.

06/13/2026

This is a lecture about the genetic disease Loeys-Dietz syndrome, designed for trainees and medical professionals. Lecture by Philip M. Boone, MD, PhD.Acknow...

06/07/2026

https://give.marfan.org/campaign/in-memory-of-milan-lazorcik/c246341?utm_source=Campaign%20Monitor&utm_medium=email&utm_term=here&utm_content=2026%20Annual%20Fund%20Email%203%20CID_5183dfa2673e2511e98a68c683e2b3a6&utm_campaign=2026%20Annual%20Fund%20Email%203

In Celebration of You  Love and Miss You Always Milan A. Lazorcik 1994 - 2018 Milan was born October 4, 1994, in Chula Vista California, the only child of George S. Lazorcik. Milan lived in Chula Vista, Ca near San Diego, his whole short life. He loved San Diego, it was his city...

06/07/2026

DON'T MISS OUT: CONFERENCE REGISTRATION FOR KIDS AND TEENS CLOSES TOMORROW!
Register Now: marfan.org/conference

Peter Donato, who was diagnosed with Loeys-Dietz syndrome more than twenty years ago, is the Foundation's volunteer Teen Program Leader. Meet him -- and teens from around the globe -- at the "Teen Connect" session on Monday, June 15 at 7:00 pm (ET). And check out some of our other teen programming, including "Artistic Expression", "Teen Transitions," and "Ask the Experts."

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