Titre : | URDDAD Foundation : Ultra Rare Disease Disorders And Disabilities Foundation |
Type de document : | Site internet |
Année de publication : | 21/07/2016 |
Langues: | Anglais |
Mots-clés : | association ; maladie neuromusculaire ; maladies rares ; Royaume-Uni ; site web |
Résumé : | The Ultra Rare disease Disorders and Disabilities Foundation is a charity that is striving to raise awareness of the cost of drugs for raredisease/ultra,rare disease it is set up in Northern Ireland the charity number is NIC102130 the HMRC number 00089 the charity has been set up by the grandparents of Cavan Tommy Hoey he has (XLP) (HLH) it has been working and researching into rare/ultra,raredisease for the past 12 years when Cavan became ill they started trawling web sites to try and find out what XLP HLH was without much luck they decided then they would have to raise awareness of rare and ultra rare diseases. |
Lien associé : | Site Internet URDDAD |
Date mise à jour : | 13/09/2023 |