Rare Disease Groups & Organisations https://childgrowthfoundation.org/ Focused on the support, understanding and management of rare growth conditions to improve the lives of children, adults and families with growth conditions, those with a concern and those seeking a diagnosis. https://iamhh.org/ Support, awareness, and community for individuals affected by Kallmann Syndrome and CHH. https://www.musculardystrophyuk.org/ Support, research, and advocacy for people affected by muscle-wasting conditions in the UK. https://www.cavernomaireland.ie/ Support, information, and awareness for people affected by the vascular condition cavernoma in Ireland. www.fpwr.org.uk Research, support and education around the Genetic Disorder Prader–Willi syndrome williams-syndrome.org.uk Supporting families, carers and people with Williams Syndrome rarechromo.org Unique supports and informs anyone born with a rare chromosome disorder, their families and carers. Winners of Eurordis Patient Organisation Award 2016 tuberous-sclerosis.org Research, support and education around the rare disease Tuberous Sclerosis Complex tofs.org.uk TOFS is a registered UK charity providing emotional support to people born with #TracheoOesophagealFistula and associated conditions thalidomidetrust.org We are a registered charity committed to ensuring that all our beneficiaries have access to the resources and support they need to maximise their quality of life undiagnosed.org.uk SWAN UK (Syndromes Without A Name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions shinecharity.org.uk Supporting over 11,000 people living with or affected by #Spinabifida and #Hydrocephalus across England, Wales and Northern Ireland pspassociation.org.uk Helping people living with Progressive Supranuclear Palsy & Corticobasal Degeneration to live the best life they can https://www.pseudomyxomasurvivor.org/ Pseudomyxoma Survivor is the network for survivors and care givers of the rare cancer, Pseudomyxoma Peritonei (PMP) porphyria.org.uk The BPA is a national charity for people with porphyria – a group of rare inherited disorders. The charity was established in 1999 naadvocacy.org The Advocacy for Neuroacanthocytosis Patients was established in 2002 to support neuroacanthocytosis (NA) patients and to develop research aimed at alleviation of the disease myaware.org Myaware is the only national registered charity supporting people with myasthenia. We also fund research, specialist nurses and advisors msatrust.org.uk The UK’s leading charity supporting people affected by multiple system atrophy. We rely entirely on voluntary donations and fund research into MSA mpssociety.org.uk Support, Research and Awareness. The MPS Society UK is the only registered charity providing professional support to those affected by MPS and related diseases mndassociation.org Our vision is a world free from motor neurone disease mrcg.ie Medical Research Charities Group (MRCG). Umbrella org for Irish charities involved in health research maxappeal.org.uk Max Appeal! is a UK registered charity supporting families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion ukmasto.org UK Mastocytosis Support Group Cutaneous Mastocytosis, Systemic Mastocytosis, UP, TMEP, IA, MCAS marfantrust.org Founded in 1988, the Marfan Trust funds research into the cause & prevention of Marfan syndrome, an inherited cardiac disorder which affects the eyes & skeleton lamaction.org LAM Action is the UK charity for women & families with Lymphangioleiomyomatosis (LAM) and doctors caring for women with LAM jtsma.org.uk ipposi.ie Ensuring patients in Ireland have prompt access to new and developing health innovations hypermobility.org Supporting those with one of the following syndromes: Ehlers Danlos, Joint hypermobility, Marfan, Osteogenesis Imperfecta, Stickler syndrome and rarer disorders hdani.org.uk HDANI is a NI registered charity which supports people affected by Huntington’s disease. We provide support, information & advice to families and professionals hdyo.org Supporting children, teens and young adults, around the world, impacted & affected by Huntington’s disease eurordis.org EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 812 rare disease patient organisations from 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe facebook.com/EDSAwarenessIreland To promote awareness of EDS and related conditions within Ireland and to reach out to those affected by the illness to give them support clicsargent.org.uk When cancer strikes young lives CLIC Sargent helps families limit the damage cancer causes beyond their health brittlebone.org The national charity that supports individuals and families affected by Osteogenesis Imperfecta (OI). ataxia.org.uk The leading national charity in the UK for people affected by any type of ataxia. We fund research into finding treatments and cures, offer advice, information and support. angelmanireland.com Angelman Syndrome as a rare disorder falls into all our lives out of the blue. This is our journey, our mistakes, challenges and high points. 22q11northernireland.co.uk 22q11 Northern Ireland is a registered charity which aims to raise awareness about 22q, and to support individuals and families affected by the syndrome.
