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.
Gaucher Voices
Claim This Podcastby The International Gaucher Alliance
5.0(1 reviews)
6 episodes
Updated Bi-weekly
Accepts GuestsHas Sponsors
21
Podcast Authority
BetaPoorBased on show quality, social media presence, reviews, charts, and more
Quality28
Social0
YouTube0
Engagement32
Podcast Overview
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.
Language
🇺🇲
Publishing Since
7/22/2024
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21
Podcast Authority
BetaPoorBased on show quality, social media presence, reviews, charts, and more
Quality28
Social0
YouTube0
Engagement32
6
Excellent Areas
1
Good Performance
12
Growth Opportunities
excellent
Episode Length
28 minutes
Performing excellently!
good
Show Notes Quality
3.0/5
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poor
Publishing Consistency
Every 68 days
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Recent Episodes
February 28, 2026
From Isolation to Impact: Advocacy in Action
<p><strong>Real experiences. Real voices. Real advocacy. This RareDisease Day, discover how patients and caregivers turn lived experience into action.</strong></p><p>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.</p><p>In this podcast, you will hear from:</p><p><strong>Vesna Aleksovska</strong>, Gaucher patient, moderating theconversation, Republic of North Macedonia, IGA Developmental Programme</p><p><strong>Sintia Tamele</strong> 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.</p><p><strong>Aviva Rosenberg</strong> is a health care attorney based inPennsylvania. She has practiced health law throughout the United States andtaught as an adjunct professor at several universities.<br>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.</p><p><strong>Maurice Moure </strong>is a German Type 3 Gaucher patient,father of a 3-month-old daughter and second chairman of the German Gaucherpatient’s organisation.</p><p><strong>Kate Theochari,</strong> 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.</p><p> </p><p></p>
June 25, 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.
April 24, 2025
Living with Gaucher Disease in Africa
<p>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).</p>
6 total episodes available
Recent guests on Gaucher Voices
Guests from recent episodes — sign up to see every guest that has ever appeared on this show.
Ricardo
Guest
Rigoberto Maldonado
Guest
Marta
Guest
Agustin
Guest
Alexandra Gallese
Guest
Emilse Peña
Guest
Elsa
Guest
Ezequiel Torrilas
Guest
Veronica
Guest
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Frequently asked questions
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- What is Gaucher Voices?
- How often does this podcast release new episodes?
This podcast updates bi-weekly.
- Where can I listen to this podcast?
This podcast is available on 7 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
Yes, this podcast regularly features guests.
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