sábado, 18 de mayo de 2024

#ActRare2024: Life with MCOPS12 and how European action can make a difference May 2024

https://www.eurordis.org/how-european-action-can-make-a-difference/ #ActRare2024 With the EU elections quickly approaching, we spoke to Reinhard Pell, co-founder of patient organisation Cure MCOPS12, where we discussed his family's experiences living with an ultra-rare disease, and what the next EU commission can do to support Europe's rare disease community.

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