209: An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia
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 a...
28 Jan 19min
208: An Interview With Wesley Michael, Founder of Rare Patient Voice
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 ...
21 Jan 7min
207: An Interview With Katharine Provencher, Director of Patient Advocacy at IgG4Ward!
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...
12 Jan 11min
206: An Interview With Cecilia Dueñas, PsyD, on Discrimination and Stigma She Encountered Before Getting Diagnosed With PBC
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 diagn...
5 Jan 12min
205: An Interview With Sickle Cell Disease Patient Advocate Golie-Lorenzo Green
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...
30 Des 202513min
204: An Interview With Jana Monaco, a NORD Patient Ambassador From Virginia
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.
22 Des 202514min
203: An Interview With Dr. Matthew Might on How AI Could Transform Genome-Guided Medicine
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...
17 Des 202510min
202: An Interview With Dr. Sarah Chang on the Patient and Caregiver Burden of TK2d
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.
8 Des 202510min
