From Isolation to Impact: Advocacy in Action
Real experiences. Real voices. Real advocacy. This RareDisease Day, discover how patients and caregivers turn lived experience into action.
In the world of rare diseases, a diagnosis is often like asolitary journey. But with the IGA, it's a family journey. And from isolation,we go into a global movement. This is why in this podcast we are exploring avery interesting subject of advocacy in action. And we are not just talkingabout policies, about medicines, we are talking about moments that change ourlives. We have amazing leaders from the Gaucher community who have turned theirpersonal experience into a catalyst for change.
In this podcast, you will hear from:
Vesna Aleksovska, Gaucher patient, moderating theconversation, Republic of North Macedonia, IGA Developmental Programme
Sintia Tamele is a mother of two, and her firstbornhas Down syndrome. She is a biologist, public health professional, Mozambicanactivist, and founder of AMODORA (Associação Moçambicana de DoençasRaras), where she leads advocacy, inclusion, and support initiatives for peopleliving with rare diseases and their families.
Aviva Rosenberg is a health care attorney based inPennsylvania. She has practiced health law throughout the United States andtaught as an adjunct professor at several universities.
Aviva was diagnosed with Gaucher disease at age 27, following 20 years ofsymptoms with no answers. Her son, Eli, also has Type I Gaucher disease.Aviva’s passion is educating about genetic diseases and screenings and talkingabout her personal journey with Gaucher disease, including the need to shortenpatients’ diagnostic results.
Maurice Moure is a German Type 3 Gaucher patient,father of a 3-month-old daughter and second chairman of the German Gaucherpatient’s organisation.
Kate Theochari, Gaucher patient, mother, and nowgrandmother, has been advocating since 1997. She endured a hard 12-year journeyto diagnosis and fought for reimbursement for Lysosomal Diseases in Greece.Founder of the Greek Lysosomal Diseases Association "Solidarity”, built astrong Lysosomal empowered patient community in. Greece. Has been in theInternational Gaucher Alliance since 1999 Lemnos and serves on the boards ofRare Diseases Greece and the Greek Patient Umbrella Organization. Kate saysthat today, Patient organisations prioritize evidence-based advocacy, policyinfluence, and structured, professional approaches — a significant evolutionfrom the past.
