Rose Okoma

Founder and Executive Director

As she likes to ask "Should I present myself before or after rare disease?" Because I have the privilege of having 2 lives "Aside from university degrees, the different jobs that she does her most rewarding human experience is to volunteer, raising awareness as a patient of GNE myopathy and rare neuromuscular diseases. GNEM certified advocate (NDF) and member of Rare Global Advocate Leadership Council (Global Genes) she intends through awareness and advocacy to change the Ivorian health system on the management of rare neuromuscular diseases in Cote d'Ivoire.

Giovanni Brunato

Vice Executive Director

Quality Controller, he was immersed in the world of rare diseases through his wife who is affected by GNE myopathy.

Gisèle Okoma

Chief operating officer

Bachelor's degree in Business Communication and in Sociology. Since the 2000s, with her sisters, she has traveled the hard road of diagnostic research. Her knowledge of rare diseases and her expertise in patient support are essential assets for the organization.

Rebecca Thaumiocot

Treasurer

Bachelor's degree in Modern Letters and having acquired a great experience in the field of marketing, she learned about rare neuromuscular diseases through some members of her family. Her managerial and organizational skills add value to the association.

Mariam Kone

Vice treasurer

Caregiver and childhood friend of some members, she does not hesitate to help patients but also to ensure the proper functioning of the position assigned to her in the organization.

Michelle Togon

Co Communication Manager

Businesswoman and best friend of the founder, she has been incredibly supportive throughout her friend's diagnostic journey. Communicating and very organized in business and in life, she is an indispensable resource for the Association.

Solange Okoma

Co Communication Manager

Trained as a cashier and head of a confectionery company, she lives the daily life of GNE myopathy with her sisters. Her assets? Her sense of management, organization and communication.

Evrad Yao

Co Social media manager

Bsc in Computeur and head of a multi-service company he puts his IT skills at the service of the organization.

Juliette Zalasse

Responsable évènement et patient

Senior Executive at the Ministry of Technical Education and Vocational Training, she is experiencing the difficulties of Duchenne Muscular Dystrophy with her son. Difficulties in diagnosis, care and support for patients. Her courage, strength and tenacity help the Association in its actions.

Adrien Okoma

Co Social media manager

Head of a food company he is quickly confronted with rare diseases by helping and following his sisters in diagnosis research. He is always available to seek innovative solutions to help his sister with GNE myopathy. 

OUR VOLUNTEERS

Maurizio Zuberbuhler

Building contractor, philanthropist and always available to help people. He took to heart to help the founder in her actions with the organization in Italy and in Ivory Coast.

 

Blandine Kouame

Quality Controller and childhood friend of the founder, she does not hesitate for a single moment to provide physical and moral support to patients.