Menu
Skeletal Dysplasias Summit 2024
07/10/2024
Making a Difference for Rare Diseases and Disorders in the New EU Legislature Hosted by MEPs Jonás Fernández,Tilly Metz, Kristian Vigenin, and Andrey Kovatchev, the representative organisations
The European Parliament Makes Progress Towards EU Disability Card
19/01/2024
On January 18th, the Committee on Employment and Social Affairs (EMPL) of the European Parliament debated on the European Disability Card, adopting a proposal for
The Importance of Psychological Support in the Care and Treatment of Achondroplasia and Other Bone Dysplasias
14/12/2023
Miriam Pérez Vallmitjana and Ignacio Ginebreda Martí ABSTRACT For more than 30 years, psychological support has been provided by our department to all patients affected
Reflecting on the Skeletal Dysplasias Summit 2023: The Path to Dignity
05/12/2023
On November 30, 2023, Skeletal Dysplasias Alliance Summit brought together representative groups of people with Skeletal Dysplasias (SD) from France (APPT), Spain (ALPE), the Netherlands
SD Alliance Summit 2023: ‘The Ideal Pathway’
29/11/2023
The SDA is excited to announce that our third Summit will be held on November 30, 2023 in the European Parliament. This year, our focus
SD Alliance Presentation Event at the European Parliament
30/09/2022
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