| |  |  | The Cavan Tommy Hoey Blog | | Support Group For Families and Patients with Rare Diseases |
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| Welcome to our Blog Site we are a support group for Patients, Families and Carers of children with Rare Diseases and Disabiltys we are the Northern Ireland Organisors of Rare Diseases Day the Trust is named after Cavan Tommy Hoey our grandson who has XLP X Linked Lympho-Proliferative Disorder,and EBVHLH,Ebstein-Bar Virus Driven By HLH Hemophagocytic Lymphohistiocytosis. Cavan has been the main inspiration of setting up The Cavan Tommy Hoey Trust he has shown us true grit and determination to fight these diseases he shows us all the meaning of living with the nightmare of rare disease. |
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