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.

Mission and objectives

The SDAlliance intends to reinforce the unity of all people with SD in Europe and allows us to articulate a common voice to make impact before policymakers and society. Our mission is the promotion of knowledge and better policies on SD, to ensure that people with SD enjoy quality of life and rights on an equal footing with the rest of the population.

Our objectives are: 

  • Create a stable platform to continue building alignment between SD groups on the needs in European and national policies.
  • Broaden the scope of participant countries and organisations to be a worldwide point of reference on SD advocacy.
  • Work towards the inclusion of the SD perspective and demands in future policy decision-making by providing guidance and input in policy debates on the needs of people with these conditions in a variety of topics (healthcare, social protection, education and employment).
  • Be a platform for knowledge and awareness on SD among policymakers, clinical and social experts, and society.



Experts committee

Sinikka Hiekkala

Research Director at the Finnish Association of People with Physical Disabilities.

Tom Shakespeare

Social scientist and bioethicist. Researcher on disability. Co-director of the International Centre for Evidence in Disability at LSHTM. Fellow of the British Academy.

Valérie Cormier-Daire

Clinical expert. Centre de référence Maladies Osseuses Constitutionnelles (MOC) Département de génétique. Hôpital Necker-Enfants Malades, Paris.

Geneviève Baujat

Clinical expert. Centre de référence Maladies Osseuses Constitutionnelles (MOC) Département de génétique. Hôpital Necker-Enfants Malades, Paris.

Yavor Pukalski

Paediatric orthopedist. Assistant professor at the Department of paediatric orthopedics and traumatology. UMHATEM “N. I. Pirogov”.

Erin Pritchard

Lecturer in Disability Studies at Liverpool Hope University and core member of the Centre for Culture and Disability Studies (CCDS). Author of “Dwarfism, Spatiality and Disabling Experiences”.

Antonios Ktenidis

Lecturer on Children with Special Educational Needs and Disabilities (SEND) at Carnegie School of Education (Leeds Beckett University).

Saulo Fernández Arregui

Physologist, Professor at Universidad Nacional de Educación a Distancia (UNED). Research on “Processes related to Threat, Devaluation & SelfEmpowerment.”

Felipe Orviz Law advisor in ALPE Achondroplasia Foundation

Political patrons