About SD Alliance

In 2020, seven representative organisations of people with achondroplasia and other Skeletal Dysplasias from different countries across Europe (Bulgaria, Finland, France, Netherlands, Slovakia, Spain, and UK) decided to work together in an advocacy project. In 2024, the Alliance expanded for the first time, welcoming the addition of a Norwegian organisation.

We aim to promote the long-forgotten discussion of the needs and challenges of people with short stature both in EU and national policies. To that end, we decided to develop a Consensus Paper addressing the situation of ASDD in Europe and proposing political actions to improve it. 

Our Consensus paper was a cornerstone for advocacy on SD, as it analysed for the first time the integral needs of these conditions in terms of stigma, health issues, social protection and barriers in education and employment.

In November 2021, the SD group presented the Consensus in an institutional event with the support of five representatives of the EU Parliament and the European Commission. The presentation of the Consensus  showcased that political and social dialogue is necessary to reduce and overcome the challenges faced by affected people. To this end, the promotion of coordinated, active work of ASDD organisations is essential. 

In 2023, the SD Alliance created ‘The Ideal Pathway’, outlining the health and social needs of a person with SD throughout their lifetime. During the 2023 Summit, this pathway was presented to members of the European Parliament and Commission as well as experts in the SD field, advocating for awareness and concrete actions towards improving the lives of people with SD across Europe.