Meet the Patient Advocates

A series of calls with leaders working to amplify the voices of people living with a rare disease around the world.

Episode 9 : Meet Lee and Nuala

Meet Lee Reavey and Nuala Ryan, NCBRS Worldwide Foundation

Episode 8 : Meet Lara

Meet Lara Bloom Founder and CEO of the Ehlers Danlos Society

Episode 7 : Meet Prasanna

Meet Prasanna Shirol, the ground-breaking founder and President of the Organization for Rare Diseases India

Episode 6 : Meet Nicole

Meet Nicole Millis, CEO of Rare Voices Australia, and an advocate for national policy change for rare diseases.

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 Anido de Pena, 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.