Mencía DE LEMUS

Mencía de Lemus is a patient advocate for rare diseases since the diagnosis of her 2 children with SMA, a rare neuromuscular condition. She has lived and been part of the profound change that the SMA community has experimented from not having therapeutic options to have now three approved therapies to treat this strongly disabilitating disease.

Mencía is at present an alternate member at the Committee for Advanced Therapies at the EMA. She is also the former president of SMA Europe, and umbrella organization representing 23+ national patient organisations on SMA and of FundAME, the Spanish SMA patient organisation. Mencía has contributed to the inclusion on the patient perspective on the drug development and on the drug assessment processes, she has lead the creation of a national patient led registry, and on the development of patient relevant outcomes for SMA. She has also informed the reimbursement decisions that have led to access to patients to approved therapies.

Mencía beleives on the transforming capacity of patients of the rare disease arena. She thinks this can be achieved by participating and informing the decisions that affect the rare disease community. For this, she finds empowerment and education is crucial.