European Pillar of Social Rights

The European Pillar of Social Rights sets the basis and framework for a fairer and more inclusive Europe.

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Call for the 4th ALPE Awards

We are pleased to announce the 4th ALPE Awards 2018 for the best work

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BioMarin starts LIAISE study on achondroplasia

In November 2017, BioMarin shared an update for Associations and Families on achondroplasia

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A new clinical trial starts for achondroplasia

Therachon announced on the 14th February 2018 to have started the phase 1 of the clinical trial for TA-46.

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ALPE representation at the European Parliament in the ERN BOND meeting

On the 28th February 2018, the Rare Diseases Day

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1st Meeting of the Multidisciplinary Unit of Skeletal Dysplasias (UMED)

More than 130 people from hospitals all over Spain

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The Virtual platform of the European Reference Networks

The European Reference Networks for Rare Diseases (ERNs) were created

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Growing up with a sibling with dwarfism: perceptions of adults non-dwarf siblings

This study was conducted by Tharina Guse and Clare Harvey, 

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BioMarin Achondroplasia Clinical Development Programme Update

BioMarin released the following update for Associations and Families in December 2017.

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