Meet the Patient Advocates

We invite you to “Meet the Patient Advocates”

Through a series of online calls you will meet individuals working to amplify the voices of people living with a rare disease around the world.

Episode 5 : Meet Muriël and Sheila

Sheila Khawaja and Muriël Marks, two dynamic rare disease advocates from the World Alliance of Pituitary Organizations (WAPO)

Episode 4 : Meet Roberta

Meet Roberta, President of the Federación Argentina de Enfermedades Poco Frecuentes (FADEPOF), and an advocate for families living with a rare disease.

Episode 3 : Meet Samuel

Meet Samuel Agyei Wiafe, Founder of the Rare Disease Ghana Initiative, an organisation transforming Ghana’s rare disease landscape.

Episode 2 : Meet Toto

Meet “Toto” Peña Aragón, a patient advocate living with gaucher disease and changing the landscape for rare disease in Mexico with the Federación Mexicana de Enfermedades Raras.

Episode 1 : Meet Ritu

Meet Ritu Jain, the president of the Asia Pacific Alliance of Rare Disease Organisations (APARDO), and an inspiring patient advocate.