Gaucher Voices

About Gaucher Voices

A series of podcasts looking at different aspects of Gaucher Disease, a rare Lysosomal Storage Disorder (LSD). Each 30-minute episode will look at a different aspect of living with Gaucher Disease from the patient's perspective, with additional expert information from medical practitioners, scientists and researchers.

Publisher

The International Gaucher Alliance

Category

education

Language

en

Explicit

No

First episode

22 Jul 2024

Latest episode

29 Sept 2026

Latest episodes

7 episodes in the feed.

1. 

   29 Sept 2026

   Building for tomorrow.

   In this episode of Gaucher Voices, we explore an incredibly important topic for the future of patient organisations: sustainability, succession planning, and developing the next generation of patient advocates. 🎙️ Listen now to hear more about building the future of patient advocacy.

2. 

   28 Feb 2026

   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.

3. 

   25 Jun 2025

   Vivir con la enfermedad de Gaucher en América Latina Central

   Patients Ricardo, Rigoberto Maldonado, Marta, Agustin, Alexandra Gallese, Emilse Peña, Elsa, Ezequiel Torrilas, and Veronica share their experiences living with Gaucher disease and navigating diagnosis and treatment access in Central and Latin America in this interview episode.

4. 

   24 Apr 2025

   Living with Gaucher Disease in Africa

   In this episode, Prof. Christian Hendriksz talks about the challenges and progress made in Africa regarding diagnosis, management and treatment, together with Emma (GD patient from Kenya), Laurence (GD parent from Rwanda) and  Roselyn Odero (Gauhcer Leader at IGA and a patient advocate from Kenya).

5. 

   24 Jan 2025

   Pregnancy and Gaucher disease - what you need to consider

   In this episode, Prof. Shoshana Revel-Vilk of the Shaare Zedek Medical Center in Israel, speaks with three women with Types 1 and 3 Gaucher disease about their experiences of pregnancy and childbirth, and the issues they needed to consider before deciding to get pregnant. If you have any questions, Prof. Revel-Vilk is happy to try to answer them You can contact her at srevelvilk@gmail[dot]com

6. 

   10 Dec 2024

   Switching from ERT to SRT

   Gaucher disease patients share their experiences in switching from Enzyme Replacement Therapy to Substrate Reduction Therapy under the guidance of Prof. Derralynn Hughes.

7. 

   22 Jul 2024

   Gene Therapy Trials - The Patient's Perspective

   In this podcast, two Gaucher Patients, Joseph and Toto, who participated in gene therapy trials speak about their experiences. Hosted by Simon Jones and introduced by IGA CEO Tanya Collin-Histed. 30 mins.

Who has been a guest on Gaucher Voices

Names identified in recent episode analyses. Showing up to five guests.

• Ricardo
• Rigoberto Maldonado
• Marta
• Agustin
• Alexandra Gallese

Reach and audience

Public platform figures. Ratings count people who left a rating, not total listeners.

Spotify

5.0 / 5

1 ratings

Podcast Authority Score: 21 / 100

A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.

Quality

28

Social presence

0

YouTube

0

Engagement

32

Contact Gaucher Voices

Guest appearances

Books guests

Based on episode analysis; this does not confirm that the show is currently accepting guests.