Connecting with other organisations

MCDS is a rare genetic skeletal disease. There are plenty of organisations and networks around the world who patients, families and doctors can get information and support from. There are no other organisations focused on MCDS but the list below features many which are specific to skeletal dysplasia or rare diseases.

International

• Little People of the World: https://www.littlepeopleoftheworld.org/
• Rare Diseases International: https://www.rarediseasesinternational.org/

Europe

• European Skeletal Dysplasia Network: http://www.esdn.org/eug/
• ERN-BOND – European Reference Network on Rare Bone Diseases: http://ernbond.eu/
• EURORDIS – Rare Diseases Europe: https://www.eurordis.org/

UK

• Little People UK: https://littlepeopleuk.org/
• Restricted Growth Association: https://rgauk.org/
• Dwarf Sports Association UK: https://www.dsauk.org/
• Little People of Ireland: http://www.lpi.ie/
• Genetic Alliance UK: https://www.geneticalliance.org.uk/
• Rare Diseases UK: https://www.raredisease.org.uk/
• Genetic Disorders UK: https://www.geneticdisordersuk.org/
• Rare Diseases Ireland: http://rdi.ie/

Australia

• Genetic Alliance Australia: http://www.geneticalliance.org.au/
• SSPA – Short Statured People of Australia: https://sspa.org.au/
• Rare Voices Australia: http://www.rarevoices.org.au/

Belgium

• RaDiOrg Belgium – Rare Disease Organisation Belgium: http://www.radiorg.be/

France

• APPT – Association des Personnes de Petite Taille: https://appt.asso.fr/
• Alliance Maladies Rares: https://www.alliance-maladies-rares.org/

Germany

• VKM ‐ BundesselbsthilfeVerband Kleinwüchsiger Menschen: https://www.kleinwuchs.de/
• BKMF – Bundesverband Kleinwüchsige Menschen und ihre Familien: https://www.bkmf.de/
• BSHV – Bundesselbsthilfevereinigung für Kinder, Jugendliche und Erwachsene mit seltenen, chronischen Skelett-Erkrankungen: https://www.bshv-seltene-skelett-erkrankungen.com/
• ACHSE – Allianz Chronischer Seltener Erkrankungen: https://www.achse-online.de/de/

Italy

• AISAC – Associazione per l’Informazione e lo Studio dell’Acondroplasia: https://www.aisac.it/
• UNIAMO – Federazione Italiana Malattie Rare: http://www.uniamo.org/