Advocacy in Practice

Barbara Diana | October 20, 2015

Raising awareness of rare diseases is a shared mission. And raising LSD disease awareness and funding for a patient group at the same time is a win-win situation. That’s just what happened at the recent Society for the Study of Inborn Errors in Metabolism (SSIEM) conference in Lyon, France. It’s a simple but creative idea whereby physicians were encouraged to visit the Genzyme booth and complete an iPad challenge game to test their knowledge of LSDs. For every completed game, a donation was made to the French LSD patient group VML (Vaincre les Maladies Lysomales) while physicians could learn more about LSDs. VML is using the money raised to organise their first Niemann-Pick professional and family meeting. This was an overwhelmingly positive collaboration and a model that could potentially be adopted in your country! 

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