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DysNet

Acronym: DysNet

General Information

Identification Code: 047603512537-13
Website: [object Object]
Entity Form: Förening
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 1/4/2014
Last Update: 9/18/2023
EP Accredited Number: 0

Mission & Interests

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. DysNets 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 (...)
Interests Represented: Promotes their own interests or the collective interests of their members
Interests:
  • Consumers
  • Digital economy and society
  • Education and training
  • Employment and social affairs
  • Justice and fundamental rights
  • Public health
  • Research and innovation
  • Youth
Levels of Interest:
  • global

Activities

Main EU Legislative Proposals: DysNet is a federation representing member organisations throughout Europe. One of our focusses – that we will 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
Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: Nybodagatan 1
Post Code: 17142
City: SOLNA
Country: SWEDEN
Phone: [object Object]

EU Office

Address: Rue du Chantier 2
Post Code: 1000
City: Bruxelles
Country: BELGIUM
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: Our principal source of income are membership fees.

Membership Information

Members10 Percent: 3
Members25 Percent: 1
Members50 Percent: 0
Members75 Percent: 0
Members: 4
Members F T E: 0.550000011920929

Structure

Structure Type: Structure
Is Member Of: 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)
Organisation Members: Rare Disease Europe (EURORDIS) European Disability Forum (EDF)