Links and resources

Patient Organisations / Support Contacts

22Q11 Ireland Support Group

Alpha One Foundation

Alzheimer Society of Ireland

Angelman Syndrome Ireland

Ataxia Ireland

Bee for Battens

CanTeen Ireland

Cleft Lip and Palate Association of Ireland

Cystic Fibrosis Association of Ireland

Cystinosis Foundation Ireland 

DEBRA Ireland

Dyspraxia Association of Ireland

Fabry Ireland

Fanconi Anaemia Ireland


Feileacain - Stillbirth and Neonatal Death Association

Fighting Blindness

Huntington’s Disease Association of Ireland

Ichthyosis in Ireland

Irish Behcet's Support Group

Irish Cancer Society

Irish Fragile X Society

Irish Haemochromatosis Association

Irish Haemophilia Society

Irish Heart Foundation

Irish Raynauds and Sclerodoma Society

Irish Kidney Association

Irish Lupus Support Group

Irish Motor Neurone Disease Association

Irish Society for Mucopolysaccharide Diseases (MPS)

Lupus Group Ireland

Marfan Syndrome Support Group

Mito Families Ireland, email

Muscular Dystrophy Ireland

Myasthenia Gravis Association

Myeloma Support Group

Neurofibromatosis Association of Ireland

Prader Willi Syndrome Association Ireland (PWSAI)

Progressive Supranuclear Palsy (PSP) Association, email

Pulmonory Hypertension Association

Rett Syndrome Association Ireland

Syringomyelia Self Help Group

Tarlov Cyst Disease  Sharon Gillece,

Tourette Support Ireland

Turner Contact Group Ireland

Unique - Rare Chromosome Disorder Support Group

Williams Syndrome Association of Ireland

Further Resources - Ireland

Central Remedial Clinic (CRC)

Clinical Trials Information for Patients

Department of Health and Children

Disability Federation of Ireland ( DFI)

Europlan Information

Inclusion Ireland

Irish Platform for Patient Organisations, Science and Industry (IPPOSI)

Irish Patients' Association

Irish Stem Cell Foundation (ISCF)

Medical Research Charities Group (MRCG)

Northern Ireland Rare Disease Partnership

Further Resources - International

European Organisation for Rare Diseases ( Eurordis)

Genetic Alliance UK

National Organisation for Rare Disorders (NORD) USA

Northern Ireland Rare Disease Partnership

Rare Connect

Rare Disease Day

Rare Disease UK


Joan Brosnan Niall QuinnDeirdre DeBurcaRare Diseases Day Launch 2009