About · Built by families
About DysNet: a network families built.
In 2009, the Swedish Thalidomide Society (FfdN), the EX-Center knowledge and rehabilitation centre and the UK Thalidomide Trust registered EDRIC, the European Dysmelia Reference Information Centre, in Sweden. The portal opened in 2012 and the network became DysNet: the only global network dedicated to congenital limb differences.
01 · Vision
What we work towards.
A world where every family affected by a congenital limb difference can find the knowledge that concerns them, and where the community’s own data drives the research that shapes their care. DysNet pools what member associations know at national level into a shared international resource: documented research, a registry owned by patients themselves, and one voice in the institutions where decisions are made.
02 · Three missions
Everything DysNet does fits one of three missions.
Knowledge
The international reference point for limb-difference research: five maintained registers, published as data.
Registry
The international associative registry of limb malformations, our flagship.
Voice
Families represented where European decisions are made, with mandates and reports.
03 · History
From Malmö 2012 to today.
2008-2009 · EDRIC founded and registered in Sweden (org. no. 802444-3015).
2012 · The web portal opens; first network meeting in Malmö.
2015 · Stockholm meeting; the network grows across Europe.
2025 · Co-organiser of a biorobotics conference with Regione Lombardia.
2026 · The refocused strategy: three missions, five registers, one registry.
The chair’s address to members · open on YouTube ↗
04 · The board
Volunteers who carry a mission each.
Most of the board live with dysmelia or are parents of children with limb differences, as the statutes require. Under the 2026-2029 strategy every seat owns a mission: no seat without a mission. Hover or tap a card to read the bio and write to its holder.
Claudio Pirola
Chair · Italy
Mission 3 · Voice
Claudio Pirola
Joined Raggiungere in 1999; at DysNet since its 2012 foundation. Carries representation, external voice and member relations.
Dr Loïc Rigal
Deputy Chair · France
Mission 2 · Registry
Dr Loïc Rigal
Doctor in pharmaceutical law and patient advocate. Elected board member of the French association Assedea. Deputy Chair since the general assembly of 26 August 2026, carrying the registry mission.
Michaela Moik
Thalidomide patient expert · Austria
Member relations
Michaela Moik
Thalidomide survivor, co-founder of the Austrian thalidomide self-help group, former youth social worker in Vienna.
Marie Wikström
Board member · Sweden
Rehabilitation
Marie Wikström
Coordinator and co-founder, in 1993, of EX-Center, Sweden's national knowledge and rehabilitation centre for people with multiple limb loss, run jointly by a care provider and a patient organisation. It serves mainly people with dysmelia, with thalidomide damage, or with amputations. She works for the Swedish Thalidomide Society (FfdN), active in it since 1986: its Permanent Secretary from 2004 to 2006, and president of FfdN-Stockholm for 16 years. A thalidomide survivor herself, she keeps the disability perspective at the heart of EX-Center's daily work.
Salvatore Giambruno
Treasurer
Accounts
Salvatore Giambruno
Past president of Raggiungere and of LEDHA; a career in sales management; parent of a daughter with dysmelia.
Tobias Arndt
Chief Operating Officer · Belgium
Operations
Tobias Arndt
IT expert and researcher, author on electronic commerce; supporting thalidomide projects across Europe since 2007.
05 · Documents