🌍 Join us for a Special Event! 🌍 We’re excited to partner with Alex TLC and AGSD - UK on the International APBD Patient Chat on June 25, 2025 — a special event for APBD patients aimed at connecting our global community. 🤝 Read more and register here: https://loom.ly/ctBs230 Harriet Saxe, a member of the Foundation’s Board of Directors and volunteer moderator of the Patient Chats, shared, “Our work is driven by APBD patients and families who take bold steps to shift from living in isolation, to reaching out to others, to building a community, and joining forces for finding treatments and cures. I look forward to our conversation on June 25.” Association for Glycogen Storage Disease AIGlico - Associazione Italiana Glicogenosi SAGSD - Scandinavian Association for Glycogen Storage Disease Metabolic Support UK Glykogenose Deutschland e.V. Glucolatino - Glucogenosis Hepáticas Glucogenosis Association Francophone des Glycogénoses #PatientAdvocacy #PatientVoices #ResearchInnovation #APBDResearch #raredisease #APBD #neurodegeneration #GSDIV #GSD #research #science #rare #ultrarare #IEM #inbornerrorsmetabolism #laforadisease #pompedisease #coridisease #GlycogenStorageDisease #GlycogenStorageDiseaseTypeIV #alextlc #helptocope #helptohope #leukodystrophy #agsduk #agsd (fb)

We're celebrating National Public Health Week (April 7-13) to raise the profile of rare diseases as a public health priority. APBD is 1 of 10,000 rare diseases affecting over 30 million (or 1 in 10) people in the US -- and 300 million globally. It is also among the 95% of rare diseases that have no FDA-approved treatments. While rare diseases are individually rare, they are collectively quite common and pose significant challenges and unmet medical and social needs. #NationalPublicHealthWeek #NationalPublicHealth #NPHW #WorldHealthOrganization #WHO World Health Organization (WHO) National Public Health Agency #APBDawareness #PatientAdvocacy #PatientVoices #ResearchInnovation #APBDResearch #raredisease #APBD #AdultPolyglucosanBodyDisease #neurodegeneration #GSDIV #GSD #research #science #rare #ultrarare #IEM #inbornerrorsmetabolism #laforadisease #pompedisease #coridisease #GlycogenStorageDisease #GlycogenStorageDiseaseTypeIV (fb)