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Member Story

Read The start of a new life

The start of a new life - I think porphyria began in adolescence but I was not diagnosed at the time. My... Read more >


  • Managing Your EDS Managing Your EDS - EDS UK will be holding a conferen... More >
  • International Conference “Sanfilippo Syndrome and Related Lysosomal Storage Diseases International Conference “Sanfilippo Syndrome and R... More >
  • Dysmelia Experts' Forum Conference Dysmelia Experts' Forum Conference - We have ple... More >