🔍🧬 Every piece of information matters in rare disease research. That’s why we’re proud to team up with our trusted partners at Simons Searchlight to spread the word about the Clinical Research ID (CRID). A CRID is a simple way to link your data across different studies—helping researchers see the bigger picture and make meaningful advances faster. This connection is especially valuable for families with MEF2C-related disorders. 💜 Your privacy and security always come first. CRID data are encrypted, stored on secure servers, and your personal information will never be shared or sold. ✅ Creating your CRID is simple: Visit TheCRID.org Make a unique 8-character identifier Share with your providers or studies 🔗 Add your CRID to your Simons Searchlight account at www.SimonsSearchlight.org. Thank you for contributing to #RareDiseaseResearch! #RareDiseaseResearch #CRID #MEF2C #SimonsSearchlight #USMEF2Cfoundation (fb)

📅 Planning for Boston 2026? Hotel blocks are open! We’ve secured two hotel blocks in Brookline, MA for families attending the in-person research assessments and conference. Assessment dates are set for January 15 & 16 and will be coordinated by the Chung Lab team. The MEF2C Family Research Conference will be held on January 16 from 4pm - 7pm. 🏨 Hilton Garden Inn 700 Brookline Ave — across the street from the assessment site (Used for 2024 Assessments & Simons Searchlight Blood Draws) 🛏️ $159/night | 2 Queen Beds 📌 Room Block Pricing Deadline: Dec 15 🔗 https://USMEF2C.click/26BostonHotel_HGI 🏨 Homewood Suites by Hilton 111 Boylston Street — 0.3 mi from the assessment site Includes in-room kitchens + breakfast 🛏️ $179/night (2 Queen Beds) 👥 Triple: $189 | Quad: $199 (ages 18+) 📌 Room Block Pricing Deadline: Dec 12 🔗 Book: https://USMEF2C.click/26BostonHotel_HS #MEF2C #USMEF2Cfoundation #2026BostonMEF2C (fb)