UMADE, Multidisciplinary Unit of Achondroplasia and other Skeletal Dysplasia

On May 19, 2019 we attended the presentation to the public of people with ASDD and their families

of the new Multidisciplinary Unit of Achondroplasia and other Skeletal Displasias, UMADE, of the Vall d'Hebron Hospital in Barcelona. ALPE has supported the project and collaborated closely with the responsable professionals in its creation.

The different specialties involved in the diagnosis and assessment of ASDD (Achondroplasia and other Skeletal Dysplasia with Dwarfism), either the ones in the continuous care group (pediatrics, neurosurgery, otorhinolaryngology, traumatology, rehabilitation) and punctual care ones (endocrine, speech therapy unit, phoniatrics, sleep unit, Pediatric Neurology, Maxilogacial and Psychiatry / Psychology) will work together, coordinated by a patient manager, so that, for example, the necessary visits can be made in a single day. The flow of information among them, the discussion of cases, the patient and his family and friends always in the center of this communication, will improve the care and quality of life of people with ASDD and their families.

A major breakthrough in a hospital, the Vall d'Hebron, which is among the largest hospitals in Europe and is carry¡ng out two clinical trials on products for achondroplasia: the Therachon one, on the TA-46 and Ascendis Pharma one, on TransCon technology.

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It is a project in which the ALPE Foundation has had a fundamental involvement and in which we will always be involved in search of the best care for patients with ASDD and their families, who can go to the UMADE unit from anywhere in Spain asking for the derivation by the usual means, since the VAll d'Hebron is CSUR, a reference unit.

United we are better.

For more information, the ALPE Foundation, at your service.