Links and resources

Patient Organisations / Support Contacts

22Q11 Ireland Support Group www.22q11ireland.org

Alpha One Foundation www.alpha1.ie

Alzheimer Society of Ireland www.alzheimer.ie

Angelman Syndrome Ireland www.angelman.ie

Ataxia Ireland www.ataxia.ie

Bee for Battens www.beeforbattens.org

CanTeen Ireland www.canteen.ie

Cleft Lip and Palate Association of Ireland www.cleft.ie

Cystic Fibrosis Association of Ireland www.cfireland.ie

Cystinosis Foundation Ireland www.cystinosis.ie 

DEBRA Ireland www.debraireland.org

Dyspraxia Association of Ireland www.dyspraxiaireland.com

Fabry Ireland www.fabryireland.ie

Fanconi Anaemia Ireland www.faireland.webs.com

Féach www.feach.ie

Feileacain - Stillbirth and Neonatal Death Association www.feileacain.ie

Fighting Blindness www.fightingblindness.ie

Huntington’s Disease Association of Ireland www.huntingtons.ie

Ichthyosis in Ireland www.ichthyosisinireland.com

Irish Behcet's Support Group annmurdiff@eircom.net

Irish Cancer Society www.cancer.ie

Irish Fragile X Society www.fragilex-ireland.org

Irish Haemochromatosis Association www.haemochromatosis-ir.com

Irish Haemophilia Society www.haemophilia.ie

Irish Heart Foundation www.irishheart.ie

Irish Raynauds and Sclerodoma Society www.irishraynauds.com

Irish Kidney Association www.ika.ie

Irish Lupus Support Group www.lupus.ie

Irish Motor Neurone Disease Association www.imnda.ie

Irish Society for Mucopolysaccharide Diseases (MPS) www.mpssociety.ie

Lupus Group Ireland  www.lupusgroupireland.com

Marfan Syndrome Support Group www.marfan.ie

Mito Families Ireland, email MitoFamiliesIreland@gmail.com

Muscular Dystrophy Ireland www.mdi.ie

Myasthenia Gravis Association www.mga-charity.ie

Myeloma Support Group www.mymyeloma.ie

Neurofibromatosis Association of Ireland www.nfaireland.ie

Prader Willi Syndrome Association Ireland (PWSAI) www.pwsai.ie

Progressive Supranuclear Palsy (PSP) Association, email dooley.martyn@gmail.com

Pulmonory Hypertension Association www.pulmonaryhypertension.ie/pha-ireland/

Rett Syndrome Association Ireland  www.rettsyndrome.ie

Syringomyelia Self Help Group www.syringomyelia.ie

Tarlov Cyst Disease  Sharon Gillece, s_gillece@hotmail.com

Tourette Support Ireland www.tsireland.ie

Turner Contact Group Ireland www.tcgi.ie

Unique - Rare Chromosome Disorder Support Group www.rarechromo.org

Williams Syndrome Association of Ireland www.wsai.ie


Further Resources - Ireland

Central Remedial Clinic (CRC) www.crc.ie

Clinical Trials Information for Patients www.clinicaltrials.ie

Department of Health and Children www.dohc.ie

Disability Federation of Ireland ( DFI) www.disability-federation.ie

Europlan Information www.europlan.ie

Inclusion Ireland www.inclusionireland.ie

Irish Platform for Patient Organisations, Science and Industry (IPPOSI) www.ipposi.ie

Irish Patients' Association www.irishpatients.ie

Irish Stem Cell Foundation (ISCF) www.irishstemcellfoundation.org

Medical Research Charities Group (MRCG) www.mrcg.ie

Northern Ireland Rare Disease Partnership www.nirdp.org.uk


Further Resources - International


European Organisation for Rare Diseases ( Eurordis) www.eurordis.org

Genetic Alliance UK www.geneticalliance.org.uk

National Organisation for Rare Disorders (NORD) USA www.rarediseases.org

Northern Ireland Rare Disease Partnership www.nirdp.org.uk

Rare Connect www.rareconnect.org

Rare Disease Day www.rarediseaseday.org

Rare Disease UK www.raredisease.org.uk

Gallery

Joan Brosnan Niall QuinnDeirdre DeBurcaRare Diseases Day Launch 2009