Evy Reviers

Evy Reviers is the daughter of a patient living with Amyotrophic Lateral Sclerosis (ALS). As Chief Executive Officer since 2007 and Chairwoman since 2021 of ALS Liga Belgium, Evy Reviers performs the general management of the organisation and stand up for the voice of people living with ALS in Europe and on International scale. She has obtained several priority procedures to increase the quality of life of ALS patients in Belgium. At the European level, she is the Chairwoman of EUpALS, the European Organisation for Professionals and Patients with ALS, and defends the rights of ALS patients in scientific advice procedures at EMA. She is also a member of TRICALS, Project MinE, the Rare Diseases Organisation Belgium, patient representative at EMA, and EURORDIS. She has served already for several terms as a member of the Board of Directors of the International Alliance of ALS/MND Associations and is elected again at the 2024 AGM.

Contact me at pab@ern-euro-nmd.eu

Interview:

1. a) Tell us a little bit about yourself

I am the daughter of a patient living with Amyotrophic Lateral Sclerosis (ALS). As Chief Executive Officer since 2007 and Chairwoman since 2021 of ALS Liga Belgium, I perform the general management of the organisation and stand up for the voice of people living with ALS in Europe and on International scale. I have obtained several priority procedures to increase the quality of life of ALS patients in Belgium. At the European level, I am the Chairwoman of EUpALS, the European Organisation for Professionals and Patients with ALS, and I defend the rights of ALS patients in scientific advice procedures at EMA. I am also a member of TRICALS, Project MinE, the Rare Diseases Organisation Belgium, patient representative at EMA, and EURORDIS. I have served already for several terms as a member of the Board of Directors of the International Alliance of ALS/MND Associations and am elected again at the 2024 AGM.

1. b) What is your role in EURO-NMD

I’m involved in de ALS subgroup of the EURO-NMD and part of the Patient Advisory Board of the ERN.

1. c) What are your expectations of the network

I expected from the EURO-NMD that professionals will work better together across Europe and involve the patient representatives of the EURO-NMD to include the patient voice!