People With Super Rare Disorders And Medical Conditions Are Sharing What It Took To Get DiagnosedThe author experienced severe health complications involving rare syndromes leading to blood clots, highlighting the importance of proper diagnosis and treatment.
'EB has shaped our whole lives, it's a monster' - mum of Dublin woman with 'butterfly skin' disease in plea for better careFamilies of individuals with rare disorders face challenges due to gaps in care.