In this episode of Rare on Air, host Julien Poulain revisits the crucial subject of mental health and wellbeing in the rare disease community. He engages with the Presidents of two EURORDIS member organisations, who share their hands-on initiatives in providing psychological support.
José Ángel Aibar, President of the Spanish Dravet Foundation (Fundación Síndrome de Dravet), reflects on his family's struggle with Dravet Syndrome, a severe form of epilepsy. He details how this personal experience inspired the Foundation's targeted psychological support for those affected by the condition.
Claas Röhl, President of NF Kinder in Austria, then shares his daughter's journey with Neurofibromatosis Type 1, explaining how it shaped their organisation's psychosocial support programmes.
Despite the distinct challenges faced by families in Spain and Austria, the conversation with José and Claas reveals common mental health struggles in rare disease communities and highlights the vital role these groups play.
The episode also is released ahead of the European Conference on Rare Diseases and Orphan Products (ECRD) 2024, which will feature a session focused on improving mental health in the rare disease community. The conference, held online and in Brussels on 15-16 May 2024, invites registrations at https://www.rare-diseases.eu/.
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