Eda Selebatso

Founder and Chairperson, Botswana Organisation for rare Diseases (BORDIS)

Eda Selebatso is a mother of four children, two of whom have rare conditions. A son with an undiagnosed kidney condition and a daughter with Morqio A (MPS IVA). Eda founded Botswana organisation for Rare Diseases (BORDIS) with her husband after experiencing the challenges that families affected by rare diseases in Botswana deal with. Eda is the current Chairperson of BORDIS. She holds a PgD in Project Management and a BSc in Biology and Chemistry. Eda is passionate about human development issues. Her career spans about two decades in the health, conservation, education and mining sectors. During her career she has supported organisations achieve their business goals. Eda has led and contributed to several flagship innovations in her country in her career. Her career was interrupted in 2014 when she resigned to take care of her children and support them through their health challenges. She continues to apply her skills as a pioneer in rare diseases in Botswana and globally. She serves in different global rare diseases organisations like UN NGO committee for Rare Diseases, Rare Diseases International, International Gaucher Alliance, International MPS Network and International Rare Diseases Research Consortium. She believes a person with a rare condition is equally worthy of life as any human being, and has potential to contribute to society. Eda is currently working on different programs to address health inequities and social injustices that rare disease patients and their families are faced with daily. 

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