FIRST EUROPEAN GROUP OF PEOPLE WITH SKELETAL DYSPLASIAS.

Skeletal
Dysplasias
Alliance

FIRST EUROPEAN GROUP OF PEOPLE WITH SKELETAL DYSPLASIAS

Skeletal
Dysplasias
Alliance

The first Skeletal Dysplasias Alliance
in Europe

SD stands for Skeletal Dysplasias: a group of more than 450 rare conditions associated with disorders of cartilage and bone, causing varying degrees of short stature.

 

The SDAlliance aims to reinforce the unity of all people with SD in Europe to articulate a common voice and make impact before policymakers and society. We advocate for the rights of people with SD to ensure that they enjoy quality life on an equal flooting with the rest of the population.

 

 

An European policy initiative formed by organisations representing the interest of people with Skeletal Dysplasias

Our history

This Alliance aims to enhance the action of the social organisations at European level, in a common journey of fighting for the dignity of SD people, strongly affected by historical stigma and discrimination.

2020

First meeting of representative group

2021

ASDD Consensus
Paper

2021

Institutional event

2022

Formation of Alliance

We are SD Associations from different countries and we count on the support of experts and political patrons

Our priorities

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.

Historical stigmatisation translates into numerous challenges for people with ASDD. In addition to the varied and serious health problems, which are often under-researched and under-recognised, they still suffer from severe discrimination at school and in the workplace.

Social stigma

SD are not only a range of health conditions, but also disabilities with a strong social burden behind them.

Healthcare

SD are a group of more than 450 rare conditions associated with disorders of cartilage and bone, causing very degrees of short stature.

Recognition and Accessibility

In most EU countries, SD entities to ask for social benefits in order to reduce the limitations and live independently on an equal footing with the rest of the population.

Raise your voice

Making impact

Do you want to join our community?

Latest News & Events

Skeletal Dysplasias Summit 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

Read More »