Kristian Vigenin: More medical and social care is needed for people of short stature

„With joint efforts we can fight for change. People of short stature with achondroplasia and skeletal dysplasia deserve to live with dignity, to realise their potential and to be heard. All of us must stand up for the rights and the dignity of people with rare diseases, especially those with skeletal dysplasia, across the whole of Europe.“ This was stated by the head of the Delegation of the Bulgarian Socialists in the EP Kristian Vigenin in Brussels to the Skeletal Dysplasia Alliance, which brings together representative organisations of people with rare diseases from various countries in Europe. He hosted the annual meeting of the organisations from Bulgaria, Finland, France, the Netherlands, Slovakia, Spain, the United Kingdom and Norway.

Skeletal dysplasia is a genetic condition. It is caused by a defect in a specific gene. The condition itself is relatively rare, but it is a main cause of dwarfism and of various skeletal deformities.

Kristian Vigenin noted with concern: „Although inclusion is a core European value, the needs of this group are often neglected both socially and clinically. I call on policymakers, especially those in the European Commission, to take the voice of people with skeletal dysplasia into account when drawing up policies and programmes.“

The head of the Delegation of the Bulgarian Socialists proposed concrete action: running campaigns to raise awareness and public acceptance and inclusion of people of short stature, creating accessibility policies to prevent their exclusion, and carrying out research and medical therapies.

Kristian Vigenin did not hide his pleasure that the Bulgarian representatives are among the most active in the Alliance. „I will go on working for a better quality of life for you, and on the concrete initiatives we adopted. As early as the adoption of the 2025 budget I will insist that more funds be allocated for your community“, the MEP concluded.