Together with MEPs Rosa Estaràs Ferragut, Jonás Fernández, Petar Vitanov, Radka Maxová, Stelios Kympouropoulos, Miriam Lexmann and Seán Kelly the representative organisations of people with Skeletal Dysplasias across EU are pleased to invite you to the presentation event of the Skeletal Dysplasias Alliance (SD Alliance) and its new online portal. The event will be held on 26 October from 11.30 am to 13.30 pm CET in the European Parliament, room JAN 6Q1. It is organised in collaboration with the main representative groups of people with Skeletal Dysplasias across Europe, as well as renowned experts, to discuss the prioritisation of the needs of the SD community in EU policy. It is also possible to follow the event online.
Please click here to register.
A year after the presentation of the EU Consensus document For an EU that cares about Achondroplasia and other Skeletal Dysplasias, the representative SD organisations from different European countries have decided to go a step further and unite their voices in a patient alliance, the SDAlliance. This platform aims to bring together the needs and challenges of people with SD across Europe and to be a public advocate for the rights of people with these conditions.
The SD Alliance is a milestone in the defence of the rights of people with skeletal dysplasia aiming to promote policies on genuine inclusion, in the framework of the European Disability Strategy.
SD are not only a range of health conditions, but also disabilities with a strong social burden behind them. Against this background, SD advocacy organisations are raising their voice jointly and demanding long due solution: a social Europe that delivers for people with Skeletal Dysplasias, establishing common standards, increased cooperation and providing real change.
The SD Alliance comprises groups from France (APPT), Spain (ALPE), the Netherlands (BVKM), Slovakia (Palcekovia), Bulgaria (LPOB), Finland (Lyhytkasvuiset) and the UK (FEST).
The event will be a forum to address skeletal dysplasias needs, recognising the work of representative organisations, identifying new opportunities for action in a common dialogue with experts and political representatives and making a call for other SD organisations from other European countries to join.
The understanding of these multifaceted conditions, the eradication of prejudices about them and the pursuit of policy solutions are essential to ensure that people with SD are treated with dignity and justice.
Please join us at the presentation of the first SD Alliance, in which we hope to set the cornerstone to tackle the needs of people with these conditions across all Europe.
We look forward to your participation.
Sincerely yours, Rosa Estaràs Ferragut MEP, Jonás Fernández MEP, Petar Vitanov MEP, Radka Maxová, MEP, Stelios Kympouropoulos MEP, Miriam Lexmann MEP and Seán Kelly MEP.
This event counts on the institutional support of Biomarin and Pfizer.