Beyond Achondroplasia

Growing together with Clara

Conference on achondroplasia

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In a collaboration initiative between ALPE Foundation, FIMABIS and Dr. Felipe Luna, Head of Orthopedic Surgery and Traumatology at  Málaga Central Hospital, Spain, the Second Conference of Malaga Achondroplasia Unit “Around achondroplasia – research for families” will be held in Spanish, on the 12th November 2016, Málaga.

The aim of the conference is to share experiences learned on achondroplasia, approach scientific research results with a more lay language and exchange points of views between a panel of health professionals, researchers, industry representatives, patients and their families, in order to improve health assistance to patients, clinical awareness of the condition, actual developments and news on achondroplasia.

Working in this perspective, all stakeholders can gain new insights in the direction of a participatory contribution of patients in the research and development of medicines. And if these steps are followed, research can be aligned with the real needs and expectations of patients. Basically, this is a social concept of science that is starting to gain power at several working levels in the health global system but is still a recent perspective, with a long path to take.

BioMarin will be represented in the session “Clinical research conducted by Pharmaceutical industry”, by Rob Bosley, the new director for Vosoritide and Paul Humphrey, the Associate Director for Patient Advocacy of BioMarin for the EUMEA.

Therachon will be represented by Elvire Gouze, Head researcher and Luca Santarelli, the company CEO.

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