209: An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia

2026-01-28

Rare Care Podcast

0:00

19:52

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vesna Aleksovska, chair of the nonprofit organization Life With Challenges. Aleksovska, who has Gaucher disease, advocates for all rare disease patients in North Macedonia, a former Yugoslav republic.

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209: An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia
maŋit 3 beaivvit
19:52
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vesna Aleksovska, chair of the nonprofit organization Life With Challenges. Aleksovska, who has Gaucher disease, advocates for all rare disease patients in North Macedonia, a former Yugoslav republic.
208: An Interview With Wesley Michael, Founder of Rare Patient Voice
2026-01-21
7:33
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Wesley Michael, founder of Rare Patient Voice. Since 2013, RPV has offered patients and caregivers opportunities to share their input with companies developing products to improve lives.
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207: An Interview With Katharine Provencher, Director of Patient Advocacy at IgG4Ward!
2026-01-12
11:08
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katharine Provencher, director of patient advocacy at IgG4Ward!, a nonprofit that advocates for patients and caregivers affected by IgG4-RD.
206: An Interview With Cecilia Dueñas, PsyD, on Discrimination and Stigma She Encountered Before Getting Diagnosed With PBC
2026-01-05
12:22
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Cecilia Dueñas, PsyD, on the PBC Research Foundation, and the discrimination and stigma she faced for years before getting diagnosed with the disease.
205: An Interview With Sickle Cell Disease Patient Advocate Golie-Lorenzo Green
2025-12-30
13:17
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Golie-Lorenzo Green, whose lifelong battle with sickle cell disease led him to advocate for others with the debilitating illness.
204: An Interview With Jana Monaco, a NORD Patient Ambassador From Virginia
2025-12-22
14:55
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jana Monaco, a NORD patient ambassador from Virginia who's made nationwide newborn screening her life's mission.
203: An Interview With Dr. Matthew Might on How AI Could Transform Genome-Guided Medicine
2025-12-17
10:53
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Alabama computer scientist Matthew Might, PhD, on how his son's death from a rare genetic disease led him to become an expert in AI and precision medicine.
202: An Interview With Dr. Sarah Chang on the Patient and Caregiver Burden of TK2d
2025-12-08
10:20
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Chang, PhD, about the patient and caregiver burden associated with the ultra-rare mitochondrial disease TK2d.
201: An Interview With Rheumatologist Jinoos Yazdany on the Dangers of Artificial Intelligence
2025-12-03
16:42
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews rheumatologist Jinoos Yazdany, MD, on the potentially catastrophic medical, ethical and legal consequences of relying too much on AI.
200: An Interview With Dr. Barry Byrne, Director of the UF Powell Gene Therapy Center
2025-11-24
12:26
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Barry Byrne, MD, PhD, an expert on Pompe disease and director of the University of Florida's Powell Gene Therapy Center.

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209: An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia

Rare Care Podcast

Fler avsnitt från "Rare Care Podcast"

209: An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia

208: An Interview With Wesley Michael, Founder of Rare Patient Voice

207: An Interview With Katharine Provencher, Director of Patient Advocacy at IgG4Ward!

206: An Interview With Cecilia Dueñas, PsyD, on Discrimination and Stigma She Encountered Before Getting Diagnosed With PBC

205: An Interview With Sickle Cell Disease Patient Advocate Golie-Lorenzo Green

204: An Interview With Jana Monaco, a NORD Patient Ambassador From Virginia

203: An Interview With Dr. Matthew Might on How AI Could Transform Genome-Guided Medicine

202: An Interview With Dr. Sarah Chang on the Patient and Caregiver Burden of TK2d

201: An Interview With Rheumatologist Jinoos Yazdany on the Dangers of Artificial Intelligence

200: An Interview With Dr. Barry Byrne, Director of the UF Powell Gene Therapy Center