The Social Policy Action Group (SPAG) supports EURORDIS’ work to shape policies and practices that improve the access of people living with a rare disease and their families to holistic care, and the guarantee of their social and human rights.
The SPAG is composed of 20 volunteers, representing 13 European countries and a diversity of rare diseases, disabilities, ages, and backgrounds. Its members are individuals living with a rare disease and family members, some of whom are also experts in social policy and human rights.
Why is the SPAG important?
Most people who live with a rare disease face serious everyday challenges and many societal barriers, while also living with visible or invisible disabilities. Such barriers prevent people living with a rare disease and their families, often the main carers, from living more independently and from fully participating in various areas of society, while also exposing them to a high level of psychological, social and economic vulnerability.
The SPAG supports EURORDIS’ work to change that and to progress towards a world where all people living with a rare disease can achieve their full potential, in a society that leaves no one behind.
Find out more about the SPAG in its Terms of Reference, published within the EURORDIS By-Laws.
SPAG members
| Name | Country | Organisation |
|---|---|---|
| Adéla Odrihocká | Czechia | ČAVO, Rare Diseases Czech Republic |
| Alba Parejo | Spain | AsoNevus |
| Caroline Roatta | France | Association Bernard Pépin pour la maladie de Wilson |
| Charissa Frank | Belgium | Bindweefsel.be – Vlaamse Vereniging voor Erfelijke |
| Claudio Pirola | Italy, Sweden | DysNet-Dysmelia Network |
| David Ross | United Kingdom | Rare Disease Male Mental Health Support Group |
| David Sanchez | Spain | Retina Murcia; FEDER – Federación Española De Enfermedades Raras |
| Dorica Dan | Romania | RONARD – Romanian National Alliance, Romanian Prader-Willi Association |
| Jakub Gietka | Poland | Fundacja Celując w Przyszłość – Aiming for the Future Foundation |
| Jennifer Reyes | France, USA | Association La Maison 8p |
| Jurn Anthonis | Belgium | Vereniging voor Spina Bifida & Hydrocephalus vzw |
| Kirsty Hoyle | United Kingdom | Metabolic Support UK |
| Marco Sessa | Italy | Associazione per l’Informazione e lo Studio dell’Acondroplasia |
| Nicole Faccio | United Kingdom, USA | — |
| Oleksandra Oliinyk | Ukraine | UNICEF Ukraine |
| Oriana Sousa | Portugal | Childhood Cancer International (CCI) Europe; EU Network of Youth Cancer Survivors |
| Petra Brügmann | Germany | European MEN Alliance e.V. |
| Teresa Pais | Portugal, Austria | Childhood Cancer International (CCI) Europe |
| Veronique Van Assche | Belgium | SMA Belgium; SMA Europe |
| Zhana Chokheli | Georgia | SCN2A GEORGIA |
The mandate of these SPAG members is of 3 years, from January 2024 to December 2026.