Never Give Up: Closing in on Alzheimer’s Disease
Lessons Learned as a 3rd-Generation Fabry Disease Patient
Tracking the Effect of Vaccinations on Long Covid Infections in Children and Adolescents
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Going to your conference is a major support to rare disease families! Thank you Bridge Biotechnology
@ASPA #raredisease #thankyouThank you to our 2025 Scientific Symposium and Family Conference sponsor, Aspa Therapeutics, a BridgeBio company, for your generosity as our Scholarship Sponsor. With Aspa’s support, ULF has offered scholarships to 14 families who would otherwise not be able to attend the ULF Family Conference. They can’t wait to join other families in the community and attend sessions specifically designed to meet the needs of families! ulf.org/scientific-symposium-family-conference/ #ULFConference #Leukodystrophy
@RettSyndrome #rettsyndromeWhen Umutcan was finally diagnosed with Rett syndrome at age 15, it was after years of uncertainty. Because he’s a boy, doctors didn’t initially believe Rett could be the answer. But testing confirmed what his family had long suspected 💜.
What happened next was extraordinary: Umutcan’s diagnosis helped open the door for twelve other boys in his country of Turkey to be diagnosed with Rett syndrome, too. His story didn’t just change his life; it changed the landscape of understanding Rett in boys.
His mother says, “My son is a real teacher. I am proud of him. He has taught not only his family but also the whole country and made things easier for sick children.”
On this #FeelGoodFriday, we celebrate Umutcan—a true pioneer and a quiet force for change 💜.
