DysNet
Budget
€10 — €0
EP Access
0
accredited persons
Staff
4
0.55 FTE
EU Grants
None
Mission & Goals
DysNet is an international umbrella organisation representing currently 32 member associations with about 5 500 individuals in 17 European countries. DysNet was founded as EDRIC (European Dysmelia Reference Information Centre) in 2009 and is registered as a non profit organisation in Sweden. Dysmelia covers more than 40 different rare disease syndromes and conditions under the common topic of limb differences. Scientific estimates indicate an average incidence of 50 in 100 000 live births. Limited availability of services account for a variety of health issues, including infant mortality, consequential damage, erosion of quality of life, premature ageing, lower life expectancy and other. DysNet's overarching mission is to reduce these massive health inequalities by making best practice available everywhere in Europe and beyond, through expertise networking and information dissemination, thus generating substantial added values for patients and health systems in Member States (...)
EU Legislative Interests
DysNet is a federation representing member organisations throughout Europe. One of our focusses – that we have reactivate after the pandemic – are network effects to advocate disability rights on the European level. Our contacts include Pietro Barbieri, Vice-President of Group III of the EESC. We have frequent meetings and published an interview with Mr. Barbieri on our Youtube channel and website.
Communication Activities
www.dysnet.org www.whatifyourbaby.net https://www.youtube.com/channel/UCCv5p19ekxiEELGg6JbtGWg
Interests Represented
Promotes their own interests or the collective interests of their members
Member Of
Rare Disease Europe (EURORDIS) European Disability Forum (EDF)
Organisation Members
Föreningen för de Neurosedynskadade (FfdN)(204), Thalidomide Trust(469), REACH Charity Ltd(1200), Irish Thalidomide Survivors Society (ITSS)(14), Den Norske Thalidomide Forening(17), Svensk Dysmeliförening (55), Asociación de Víctimas de la Talidomida en España (AVITE)(330), Thalidomidici Italiani ONLUS(314), Contergan NRW(800), A.V.S.B.(32), Ragguingere(300), Associazione Italiana Sindrome di Poland (AISP)(250), Hilfswerk für Contergangeschädigte e.V. Hamburg (HICOHA)(160), Interessenverband Contergangeschädigter und deren Angehörige Köln(170), Contergangeschädigte Hessen e.V.(390), Contergan Austria(12), In Our Hands(18), PiP UK(23), Assédea(140), Thalidomide Society(260), Aussiehands (210), Stichting NESOS(21), TARS(17), FfdN Stockholm(83), FfdN Väst(121), Dysmelia ASBL(25), Thalidomide Australia Inc(36), Vitachi - Talidomida En Chile(43), V.I.TA - VITTIME ITALIANE TALIDOMIDE(34) STEPS (320) Limbs4Life (160) Syndrome de Poland France (67)
Additional Information
Our principal source of income are membership fees.
Commissioner Meetings
No recorded meetings with EU commissioners.