Rare Care Podcast
By Rare Care Podcast
Listen to a podcast, please open Podcast Republic app. Available on Google Play Store and Apple App Store.
Image by Rare Care Podcast
Category: Health & Fitness
Open in Apple Podcasts
Open RSS feed
Open Website
Rate for this podcast
Subscribers: 2
Reviews: 0
Episodes: 238
Description
Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.
| Episode | Date |
|---|---|
|
228: An Interview With Dr. Michelle Ng Gong, New President of the American Thoracic Society
|
Jun 09, 2026 |
|
227: An Interview With Dr. Andrew Wilson, Scientific Director of the Alpha-1 Foundation
|
May 31, 2026 |
|
226: An Interview With Dr. Vallerie McLoughlin, Director of the University of Michigan's Pulmonary Hypertension Program
|
May 26, 2026 |
|
225: An Interview With Craig Martin, Founder and CEO of the Orphan Therapeutics Accelerator
|
May 18, 2026 |
|
224: An Interview With Henriette Farkas, Director of the Hungarian Angioedema Reference Center in Budapest
|
May 14, 2026 |
|
223: An Interview With Dr. Antón Blatnik on the Molecular Mechanisms Driving Neuromuscular Disease
|
May 04, 2026 |
|
222: An Interview With SMA Expert and Neurologist Dr. Kathryn Swoboda
|
Apr 27, 2026 |
|
221: An Interview With Dutch Neurologist Ewout Groen of SMA Europe
|
Apr 20, 2026 |
|
220: An Interview With Dr. Jaime Moore on Obesity Medications and Neuromuscular Disease
|
Apr 13, 2026 |
|
219: An Interview With Dr. Natalie Truba on the Psychological Aspects of Gene Therapy
|
Apr 07, 2026 |
|
218: An Interview With Donna Shipp on Her IgG4-RD Patient Journey
|
Mar 31, 2026 |
|
217: An Interview With Abby Bronson of Edgewise Therapeutics About Becker Muscular Dystrophy Awareness
|
Mar 30, 2026 |
|
216: An Interview With Allison Moore, Founder and CEO of the Hereditary Neuropathy Foundation
|
Mar 23, 2026 |
|
215: An Interview With John Crowley, President and CEO of the Biotechnology Innovation Organization
|
Mar 17, 2026 |
|
214: An Interview With Dr. Hyun Kim, Director of the University of Minnesota's Interstitial Lung Disease Program
|
Mar 02, 2026 |
|
213: An Interview With Andrea Wilson-Woods, Founder of Blue Faery, a Nonprofit That Advocates for Patients With Hepatocellular Carcinoma
|
Feb 24, 2026 |
|
212: An Interview With Dr. Michael Schilsky of the Yale School of Medicine, and an Expert on Wilson Disease
|
Feb 17, 2026 |
|
211: An Interview With Yen Chen, PhD, on Brain Fog Among People With Scleroderma
|
Feb 11, 2026 |
|
210: An Interview With Dr. Aleksander Krag on Diagnosing and Treating Alpha-1 Disease
|
Feb 02, 2026 |
|
209: An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia
|
Jan 28, 2026 |
|
208: An Interview With Wesley Michael, Founder of Rare Patient Voice
|
Jan 21, 2026 |
|
207: An Interview With Katharine Provencher, Director of Patient Advocacy at IgG4Ward!
|
Jan 12, 2026 |
|
206: An Interview With Cecilia Dueñas, PsyD, on Discrimination and Stigma She Encountered Before Getting Diagnosed With PBC
|
Jan 05, 2026 |
|
205: An Interview With Sickle Cell Disease Patient Advocate Golie-Lorenzo Green
|
Dec 30, 2025 |
|
204: An Interview With Jana Monaco, a NORD Patient Ambassador From Virginia
|
Dec 22, 2025 |
|
203: An Interview With Dr. Matthew Might on How AI Could Transform Genome-Guided Medicine
|
Dec 17, 2025 |
|
202: An Interview With Dr. Sarah Chang on the Patient and Caregiver Burden of TK2d
|
Dec 08, 2025 |
|
201: An Interview With Rheumatologist Jinoos Yazdany on the Dangers of Artificial Intelligence
|
Dec 03, 2025 |
|
200: An Interview With Dr. Barry Byrne, Director of the UF Powell Gene Therapy Center
|
Nov 24, 2025 |
|
199: An Interview With Rheumatologist Eric Matteson, Winner of the ACR's 2025 Presidential Gold Medal
|
Nov 19, 2025 |
|
198: An Interview With New Mexico Patient Ambassador Karen Smoot of the Pulmonary Fibrosis Foundation
|
Nov 11, 2025 |
|
197: An Interview With Gabriela Romanow, Founder of Rare Vision, a Nonprofit That Helps Artists With Rare Neuroimmune Diseases
|
Nov 04, 2025 |
|
196: An Interview With Lisa Shea, Director of Global Patient Advocacy and Engagement for Immunology at Johnson & Johnson
|
Oct 29, 2025 |
|
195: An Interview With Dr. Nicole Lamanna, Leukemia Specialist at Columbia University Medical Center
|
Oct 22, 2025 |
|
194: An Interview With Dr. May Lee Tjoa, Maternal and Fetal Immunology Expert at Johnson & Johnson
|
Oct 15, 2025 |
|
193: An Interview With Dr. John Mascarenhas, Professor at New York's Icahn School of Medicine
|
Oct 10, 2025 |
|
192: An Interview With Catherine Miller, PharmD, of Intellia Therapeutics on an Experimental Gene Editing Therapy for HAE
|
Oct 01, 2025 |
|
191: An Interview With Dr. Shoshana Revel-Vilk, Director of the Gaucher Unit at Israel's Shaare Zedek Medical Center
|
Sep 24, 2025 |
|
190: An Interview With Nikki McIntosh, Founder of Rare Mamas and SMA Patient Advocate
|
Sep 16, 2025 |
|
189: An Interview With Dr. Jennifer Brown, Director of the CLL Center at Dana-Farber Cancer Institute
|
Sep 08, 2025 |
|
188: An Interview With Michio Hirano, MD, a Global Expert on Thymidine Kinase 2 Deficiency
|
Sep 03, 2025 |
|
187: An Interview With Dr. Pradeep P.A. Mammen on Females With Duchenne Muscular Dystrophy
|
Aug 27, 2025 |
|
186: An Interview With Kfir Oved, CEO of Canopy Biotech, Which is Pursuing Novel Treatments in MG
|
Aug 18, 2025 |
|
185: An Interview With Ileen Colin del Río, President of Duchenne Mexico
|
Aug 13, 2025 |
|
184: An Interview With Aspiring DJ Yuva Gambhir
|
Aug 05, 2025 |
|
183: An Interview With Dr. Richard Nowak, Director of the Yale Myasthenia Gravis Clinic
|
Jul 28, 2025 |
|
182: An Interview With Robert Steen of Norway on the Award-Winning Movie 'The Remarkable Life of Ibelin'
|
Jul 23, 2025 |
|
181: An Interview With Dr. Carolina Barnett-Tapia, Associate Professor of Neurology at the University of Toronto, on MG Treatment
|
Jul 14, 2025 |
|
180: An Interview With Dr. Angela Vincent, Winner of the Myasthenia Gravis Foundation of America's First Lifetime Achievement Award
|
Jul 08, 2025 |
|
179: An Interview With Dr. Daniel Grant, VP and Global Program Head at Novartis
|
Jul 02, 2025 |
|
178: An Interview With Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas
|
Jun 26, 2025 |
|
177: An Interview With Dr. Sithara Ramdas on Neonatal and Juvenile Myasthenia Gravis
|
Jun 20, 2025 |
|
176: An Interview With Lyza Weisman on Living With Spinal Muscular Atrophy
|
Jun 18, 2025 |
|
175: An Interview With Allucent's Marcus Delatte, PhD, on Using Cannabinoids to Treat Patients With Rare Seizure Disorders
|
Jun 13, 2025 |
|
174: An Interview With Lucy Culp, VP of State Government Affairs at the Leukemia & Lymphoma Society
|
Jun 09, 2025 |
|
173: An Interview With Amyloidosis Patient Dan Lier, a Partner With the Nonprofit Group 'Somebody To Talk To'
|
May 26, 2025 |
|
172: An Interview With Huntington Disease Patient and Advocate Lauren Holder of Help 4 HD
|
May 19, 2025 |
|
171: An Interview WIth Antonella Favit-Van Pelt, MD, PhD, on Neuromodulation to Treat Multiple Sclerosis
|
May 15, 2025 |
|
170: An Interview With Joyce Kullman, Executive Director of the Vasculitis Foundation
|
May 08, 2025 |
|
169: An Interview With Chris Lewis, Son of Famous Comedian Jerry Lewis
|
May 08, 2025 |
|
170: An Interview With Chris Lewis, Son of Famous Comedian Jerry Lewis
|
May 08, 2025 |
|
168: An Interview WIth Lisa Butler, CEO of the GBS-CIDP Foundation
|
Apr 30, 2025 |
|
167: An Interview With MDA Patient Advocate Donavon Decker, WInner of the 2025 MDA Legacy Award for Community Impact in Research
|
Apr 28, 2025 |
|
166: An Interview With MDA 2025 Patient Ambassador Lily Sander
|
Apr 15, 2025 |
|
165: An Interview With Duchenne Expert Katherine Mathews, MD, of the University of Iowa
|
Apr 11, 2025 |
|
164: An Interview With Generalized Pustular Psoriasis Expert Arash Mostaghimi, MD
|
Apr 07, 2025 |
|
163: An Interview With Clinical Hematologist and Professor Dr. Luke Chen
|
Apr 01, 2025 |
|
162: An Interview With John Anderson, MD, Expert on Hereditary Angioedema
|
Mar 17, 2025 |
|
161: An Interview With Retired NFL Athlete and Amyloidosis Patient Advocate Art Still
|
Mar 13, 2025 |
|
160: An Interview With Heather Landau, MD, on the Latest Therapies for Amyloidosis
|
Mar 06, 2025 |
|
158: An Interview With Hereditary Angioedema Expert Dr. Timothy Craig
|
Feb 27, 2025 |
|
158: An Interview With Dr. Sangeetha Venugopal on the relationship between smoking and myelodysplastic syndromes (MDS)
|
Feb 20, 2025 |
|
157: An Interview With Andrea Renzi, a Patient Advocate for Women Affected by HDFN
|
Feb 12, 2025 |
|
156: An Interview With Dr. James Bussel on Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT)
|
Feb 05, 2025 |
|
155: An Interview With Rigoberto Garcia, Executive Director of the Hemophilia Foundation of Southern California
|
Jan 31, 2025 |
|
154: An Interview With AATD Patient Kristin Hatcher of the Global Liver Institute
|
Jan 24, 2025 |
|
153: An Interview With Terry Jo Bichell, PhD, Founder and Director of CombinedBrain
|
Jan 17, 2025 |
|
152: An Interview With Erin Collins, Founder of the Chasing Rainbows Foundation
|
Jan 06, 2025 |
|
151: An Interview With NMOSD Expert Dean Wingerchuk, MD, of the Mayo Clinic
|
Jan 02, 2025 |
|
150: An Interview With Beloved Huntington Disease Activist Jimmy Pollard
|
Dec 27, 2024 |
|
149: An Interview With Clinical Psychologist Rosalind Kalb, PhD, of Can Do-MS
|
Dec 18, 2024 |
|
148: An Interview With Huntington Disease Patient Activist Tanita Allen
|
Dec 16, 2024 |
|
147: An Interview With Jean Elwing, MD, a Pulmonary Hypertension Expert at the University of Cincinnati
|
Dec 03, 2024 |
|
146: An Interview With Payel Gupta, MD, on the Importance of Social Media in Healthcare
|
Nov 27, 2024 |
|
145: An Interview With Sandy Siegel, Founder and President of the Siegel Rare Neuroimmune Association
|
Nov 22, 2024 |
|
144: An Interview With Anastasia Vishnevetsky, MD, MPH, on the Use of Cannabis to Treat NMOSD
|
Nov 14, 2024 |
|
143: An Interview With Ignacio Muñoz-Sanjuan, PhD, President and Founder of Factor-H
|
Nov 05, 2024 |
|
142: An Interview With Amy Case, MD, Chief Medical Officer of the Pulmonary Fibrosis Foundation
|
Nov 04, 2024 |
|
141: An Interview WIth Steve Van Wormer, Cofounder and Director of the Phaware Global Association
|
Oct 21, 2024 |
|
140: An Interview With Victor Test, MD, Chair of the Pulmonary Vascular Disease Program at Texas Tech School of Medicine in Lubbock
|
Oct 16, 2024 |
|
139: An Interview With Drew Harris, MD, Expert on Black Lung Disease
|
Oct 09, 2024 |
|
138: An Interview With Mahesh Desai, PhD, of the Luxembourg Institute of Health
|
Sep 25, 2024 |
|
137: An Interview With Karin Hoelzer, DVM, PhD, Senior Director of Policy and Regulatory Affairs at NORD
|
Sep 18, 2024 |
|
136: An Interview With Susan Ward, PhD, Founder and Executive Director of the Collaborative Trajectory Analysis Project (cTAP)
|
Aug 28, 2024 |
|
135: An Interview With Taylor Kane, Founder and Executive Director of 'Remember the Girls'
|
Aug 19, 2024 |
|
134: An Interview With Dr. Jeffrey A. Cohen of the Cleveland Clinic on Cellular Therapies for MS
|
Aug 15, 2024 |
|
133: An Interview With Maureen Juip, Secretary of the Friedreich's Ataxia Research Alliance and Mother of 2 Children With FA
|
Aug 05, 2024 |
|
133: An Interview With Jacquelyn Bainbridge, DPharm, of the University of Colorado, on Cannabis Therapy for MS
|
Aug 01, 2024 |
|
132: An Interview With Michelle C. Werner, CEO of Alltrna
|
Jul 25, 2024 |
|
131: An Interview With Dr. Flavia Nelson of the University of Miami on Treatment Options for NMOSD
|
Jul 17, 2024 |
|
130: An Interview With Kevin M. Flanigan, MD, Director of the Center for Gene Therapy at Nationwide Children's Hospital in Columbus, Ohio
|
Jul 11, 2024 |
|
129: An Interview With Durresamin Khan, Pakistani Mother of a Boy With Duchenne Muscular Dystrophy
|
Jul 01, 2024 |
|
128: An Interview With Jenny Huang, Mother of SMA Patient and MIT Math Whiz Benjamin Lou
|
Jun 27, 2024 |
|
127: An Interview With Omer Abdul Hamid, MD, of Nemours Children's Hospital in Orlando, Florida
|
Jun 18, 2024 |
|
126: An Interview With Pamela Gavin, New CEO of the National Organization for Rare Disorders (NORD)
|
Jun 10, 2024 |
|
125: An Interview With Patricia Weltin, Founder and CEO of Beyond The Diagnosis
|
Jun 03, 2024 |
|
125: An Interview With Sarah Glass, PhD, of the n-Lorem Foundation
|
May 30, 2024 |
|
124: An Interview with Dimitrios Karussis, MD, PhD, on Stem Cell Therapy for Multiple Sclerosis
|
May 28, 2024 |
|
123: An Interview With Mary Morlino, Patient Navigator at the Undiagnosed Diseases Network Foundation
|
May 16, 2024 |
|
122: An Interview WIth Tracy Sharp, a Patient With Lambert-Eaton Myasthenic Syndrome
|
May 07, 2024 |
|
121: An Interview With University of Pennsylvania Neurologist and CIDP Expert Chafic Karam, MD
|
May 03, 2024 |
|
120: An Interview with Avner Reshef, MD, Top Israeli Expert in Hereditary Angioedema
|
Apr 25, 2024 |
|
119: An Interview With Pediatric Neurologist Edward Smith, MD, on the FDA Approval of Vamorolone for Boys With Duchenne Muscular Dystrophy
|
Apr 25, 2024 |
|
118: An Interview With Sharon Hesterlee, PhD, Chief Research Officer at the Muscular Dystrophy Association
|
Apr 15, 2024 |
|
117: An Interview With Ira Walker, the Muscular Dystrophy Association's 2024 National Ambassador, About Living With Spinal Muscular Atrophy
|
Apr 05, 2024 |
|
116: An Interview With Seema Lalani, MD, Director of Project GIVE, a Pediatric Rare Disease Screening Program in the Rio Grande Valley of Texas
|
Apr 02, 2024 |
|
115: An Interview With Matt Trudeau of ITF Therapeutics, on Givinostat as a Therapy for Duchenne Muscular Dystrophy
|
Mar 22, 2024 |
|
114: An Interview With Thomas Holm Pedersen, PhD, Cofounder and CEO of Denmark's NMD Pharma
|
Mar 14, 2024 |
|
113: An Interview With Courtney Silverthorn, MD, Associate VP of Science Partnerships at the Foundation for the National Institutes of Health
|
Mar 06, 2024 |
|
112: An Interview With Cristol Barrett O'Loughlin, CEO of Raregivers
|
Feb 28, 2024 |
|
111: An Interview With Omar Kamlin, MD, Senior Medical Director at Orphalan
|
Feb 23, 2024 |
|
110: An Interview With Melinda Bachini, Chief Patient Officer at the Cholangiocarcinoma Foundation
|
Feb 02, 2024 |
|
109: An Interview With Kyle Bryant, Director of the Ambassador Program at the Friedreich's Ataxia Research Alliance
|
Jan 22, 2024 |
|
109: An Interview With Paul Bolno, MD, CEO of Wave Life Sciences
|
Jan 04, 2024 |
|
An Interview With Chris Peetz, CEO of Mirum Pharmaceuticals
|
Dec 27, 2023 |
|
107: An Interview With Thierry VandenDriessche, PhD, of the European Society of Gene & Cell Therapy
|
Dec 14, 2023 |
|
106: An Interview With Brian O'Mahony, CEO of the Irish Haemophilia Society
|
Dec 14, 2023 |
|
105: An Interview With Selene Capodarca, Global Study Coordinator for HD-Enroll
|
Dec 07, 2023 |
|
104: An Interview With Professor Claire Booth, Cofounder of the AGORA Initiative
|
Dec 05, 2023 |
|
103: An Interview With Dr. Paul Bolno, CEO of Wave Life Sciences
|
Nov 21, 2023 |
|
102: An Interview With Margareth Ozelo, Director of the International Hemophilia Training Centre (IHTC) at Brazil's University of Campinas (UNICAMP)
|
Nov 15, 2023 |
|
101: An Interview With Rob Haselberg, an Huntington Patient Advocate Who Has Tested Positive for the Disease
|
Nov 14, 2023 |
|
100: An Interview With Herwig Lange, MD, President of the German Huntington Association
|
Nov 03, 2023 |
|
99: An Interview With Cathleen Lutz, PhD, Vice President of the Jackson Laboratory's Rare Disease Transactional Center
|
Oct 05, 2023 |
|
98: An Interview With Heather Stefanski, MD, PhD, Vice President of Medical Services at the National Marrow Donor Program's Be The Match
|
Sep 21, 2023 |
|
97: An Interview With Astri Arnesen, President and CEO of the European Huntington Association
|
Sep 15, 2023 |
|
96: An Interview With Derek de Winter, MD, Coordinating Investigator of the DIONYSUS Study
|
Sep 13, 2023 |
|
95: An Interview With Juan Valle, MB ChB, Chief Medical Officer of the Cholangiocarcinoma Foundation
|
Sep 01, 2023 |
|
94: An Interview With Prader-Willi Syndrome Patient Advocate Paige Rivard
|
Aug 29, 2023 |
|
93: An Interview With Italian Cholangiocarcinoma Expert Lorenza Rimassa, MD
|
Aug 21, 2023 |
|
92: An Interview With Jennifer Miller, MD, A Leading Researcher in Prader-Willi Syndrome
|
Aug 11, 2023 |
|
91: An Interview With Jennifer Knox, MD, Canada's Leading Expert in Cholangiocarcinoma
|
Aug 03, 2023 |
|
90: An Interview With Daniel Fischer, President and CEO of Tevard Biosciences
|
Jul 26, 2023 |
|
89: An interview with Damon Race, CEO of GeneVentive Therapeutics
|
Jul 19, 2023 |
|
88: An Interview With Pediatrician and Medical Cannabis Specialist Bonni Goldstein, MD
|
Jul 14, 2023 |
|
87: An Interview With Jason Sicklick, MD, FACS, an Expert on Gastrointestinal Stromal Tumor
|
Jul 07, 2023 |
|
86: An Interview With Kattayoun Kordy, MD, Senior Director of Rare Disease Clinical Development/Immunology at Janssen
|
Jun 30, 2023 |
|
85: An Interview with Denise Scots-Knight, PhD, CEO of Mereo BioPharma
|
Jun 21, 2023 |
|
84: Rare Disease Advisor
|
Jun 16, 2023 |
|
83: An Interview with Kim Smith-Whitley, MD
|
Jun 09, 2023 |
|
82: An Interview with Jason Tardio, Chief Operating Officer of Ovid Therapeutics
|
Jun 06, 2023 |
|
81: An Interview With Jennifer MacDonald, a Woman From Mexico With AATD
|
May 30, 2023 |
|
80: An Interview With Mindy Henderson, Editor-in-Chief of MDA's Quest Magazine
|
May 30, 2023 |
|
79: An Interview With DMD Patient Advocate Christopher Curran
|
May 19, 2023 |
|
78: An Interview With Leah Zelaya, a Muscular Dystrophy Association 2023 national ambassador
|
May 17, 2023 |
|
77: An Interview With Luisa Leal, Founder and CEO of The Akari Foundation
|
May 11, 2023 |
|
76: An Interview With Julie Parsons, MD, Co-Director of the Neuromuscular Clinic at Children's Hospital Colorado
|
May 04, 2023 |
|
75: An Interview With Disabled Patient Advocate Christopher Rosa, PhD, President and CEO of the Viscardi Group
|
Apr 28, 2023 |
|
74: An Interview With Matt Granato, President and CEO of the Pulmonary Hypertension Association
|
Apr 18, 2023 |
|
73: An Interview with Ron Bartek, Founding President of the Freidriech's Ataxia Research Alliance (FARA)
|
Apr 12, 2023 |
|
72: An Interview With Miranda Bradnick on How COVID-19 Has Affected Rare Disease Patients
|
Apr 12, 2023 |
|
71: An Interview With Jeff Szer, BMedSc, a Hematology Professor at Australia's Royal Melbourne Hospital
|
Apr 04, 2023 |
|
70: An Interview With Cheryl Schwartz, Takeda's Senior Vice-President of US Rare Disease Business
|
Apr 04, 2023 |
|
69: An Interview With John Berk, MD, Director of the Boston University School of Medicine's Localized Amyloid Clinic
|
Mar 20, 2023 |
|
68: An Interview With Çem Akin, MD, of the University of Michigan
|
Mar 10, 2023 |
|
67: An Interview With Dr. Abby Sandler of the National Cancer Institute
|
Feb 28, 2023 |
|
66: An Interview With George Goshua, MD, a Sickle Cell Expert at Yale University's School of Medicine.
|
Feb 27, 2023 |
|
65: An Interview With Arushi Khurana, MBBS, of the Mayo Clinic
|
Feb 27, 2023 |
|
64: An Interview With Catherine Broome, MD, an Associate Professor of Medicine at Georgetown Medstar University Hospital, in Washington DC
|
Feb 14, 2023 |
|
63: An Interview With Paul W. Noble, MD, of Cedars-Sinai Medical Center
|
Feb 07, 2023 |
|
62: An Interview With Federico Stella, MD, on the Use of Non-Restrictive Diets After Stem Cell Transplantation
|
Feb 01, 2023 |
|
61: An Interview With Abigail Jenkins, President and CEO of Gamida Cell Ltd.
|
Jan 19, 2023 |
|
60: An Interview With Peter Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD)
|
Jan 11, 2023 |
|
59: An Interview With Sara Rothschild, Executive Director of the Life Raft Group
|
Jan 09, 2023 |
|
58: An Interview With PJ Brooks, PhD, on the Bespoke Gene Therapy Consortium
|
Dec 29, 2022 |
|
57: An Interview With Scott Santarella, President and CEO of the Alpha-1 Foundation
|
Dec 09, 2022 |
|
56: An Interview With Lourdes Rocha-Nussbaum, Director of the Cholangiocarcinoma Foundation's Veterans Project
|
Dec 05, 2022 |
|
55: An Interview With Darlene Shelton, Founder and President of Danny's Dose Alliance
|
Nov 18, 2022 |
|
54: An Interview With Aiwu Ruth He, MD, PhD, Associate Professor of Medicine at Medstar Georgetown University Hospital in Washington, D.C.
|
Nov 16, 2022 |
|
53: An Interview With Dr. Brenda Wong, an expert on DMD and director of the MDA Care Center at the University of Massachusetts Chan Medical School
|
Nov 08, 2022 |
|
52: An Interview With Randi Clites, Rare Disease Policy Director at the Little Hercules Foundation
|
Nov 01, 2022 |
|
50: An Interview With Sumaira Ahmed, Founder and Executive Director of The Sumaira Foundation
|
Oct 12, 2022 |
|
49: An Interview With Martin Mense, PhD, senior vice president of the Cystic Fibrosis Foundation
|
Sep 22, 2022 |
|
48: An Interview With Deanna Tucker, Medical Science Liaison and Team Leader at Sarepta Therapeutics
|
Sep 21, 2022 |
|
47: An Interview With NMOSD Expert Dr. Michael Levy of Harvard Medical School
|
Sep 09, 2022 |
|
46: An Interview With Jennifer Wallace Valdes, PT, Founder of the Duchenne Therapy Network
|
Aug 31, 2022 |
|
45: An Interview With Janet Lynch Lambert, CEO of the Alliance for Regenerative Medicine
|
Aug 25, 2022 |
|
44: An interview with Annie Kennedy, head of policy, advocacy, and patient engagement at the EveryLife Foundation for Rare Diseases
|
Aug 21, 2022 |
|
43: An Interview With CureDuchenne Chief Scientific Officer Dr. Michael Kelly
|
Aug 15, 2022 |
|
42: An Interview With LCFAOD Patient Advocate Eileen Sullivan Baker
|
Aug 04, 2022 |
|
41: An interview with cattle rancher Paul Heaton of the Calves2Cure DMD initiative
|
Jul 27, 2022 |
|
40: An interview with Emil Kakkis, MD, PhD, founder and CEO of Ultragenyx
|
Jul 20, 2022 |
|
39: An interview With Muscular Dystrophy Researcher Pradeep Mammen, MD
|
Jul 13, 2022 |
|
38: An interview with Diana Castro, MD, associate professor of pediatrics, neurology and neurotherapeutics at University of Texas Southwestern in Dallas
|
Jul 05, 2022 |
|
37: An interview with motivational speaker Justin Skeesuck
|
Jun 30, 2022 |
|
36: An Interview With Shahid Khan, MD, of Imperial College London, on ICD-10 Coding for Cholangiocarcinoma
|
Jun 21, 2022 |
|
35: An interview with Marissa Penrod, founder of the Indiana-based nonprofit group Team Joseph
|
Jun 15, 2022 |
|
34: Dr. Mary Beth Scholand Discusses the Partnership Between CHEST and the Three Lakes Foundation
|
Jun 01, 2022 |
|
33: An Interview with Josh Disbrow, CEO of Aytu Bio
|
May 25, 2022 |
|
32: Solid Biosciences Founder Ilan Ganot Discusses His Quest for a Cure for DMD
|
May 18, 2022 |
|
31: An Interview With DMD Expert and Gene Therapy Pioneer Dr. Jerry Mendell
|
May 10, 2022 |
|
30: Dr. Henry Kaminski on the Difficulties of Treating Myasthenia Gravis
|
May 03, 2022 |
|
29: Patient Advocate Laura McLinn Discusses Her Son's Journey With DMD
|
Apr 26, 2022 |
|
28: Dr. Anthony Feinstein on His New Book About the Neurobehavioral Consequences of MS
|
Apr 22, 2022 |
|
27: Jay Griffin Discusses His Struggles Getting Treatment for His Son With DMD
|
Apr 11, 2022 |
|
Meredith O'Connor on Her Work Raising Awareness of Myasthenia Gravis
|
Apr 06, 2022 |
|
26: Dr. Courtney Young Discusses Her Company’s Approach to Treating DMD
|
Mar 30, 2022 |
|
25: Dr. Henry Lin on the Difficulty of Diagnosing LAL-D in Children
|
Mar 23, 2022 |
|
24: An Interview With Dr. Albert Faro, vice president for clinical affairs at the Cystic Fibrosis Foundation
|
Mar 22, 2022 |
|
23: An Interview With Christine Há, award-winning chef and NMOSD patient
|
Mar 16, 2022 |
|
22: Dr. Reham Abdel-Wahab Discusses Cholangiocarcinoma Therapies and Possible Future Advances
|
Mar 07, 2022 |
|
21: An Interview With Lisa Phelps Sarfaty of the National Organization for Rare Disorders Ahead of Rare Disease Day
|
Feb 24, 2022 |
|
20: An Interview With Evanthia Bernitsas, Director of the Multiple Sclerosis Treatment and Immunology Clinical Research Center at Wayne State University
|
Feb 08, 2022 |
|
19: An Interview With Nicola Longo, MD, PhD,professor of pediatrics and chief of the University of Utah's Division of Medical Genetics in Salt Lake City.
|
Feb 01, 2022 |
|
18: An Interview With MeiLan K. Han, MD, MS, chief of the University of Michigan’s Division of Pulmonary & Critical Care.
|
Jan 21, 2022 |
|
17: An Interview With Sigbjørn Berentsen, MD, PhD, a hematologist and senior researcher at Norway’s Haugesund Hospital.
|
Jan 13, 2022 |
|
16: An Interview With Researcher Adrian Krainer, PhD, From the Cold Spring Harbor Laboratory in New York.
|
Jan 05, 2022 |
|
15: An interview With Michael Yeaman, PhD, chief medical advisor to the Guthy-Jackson Charitable Fund
|
Dec 08, 2021 |
|
14: An Interview With Donald S. Wood, PhD, president and CEO of the Muscular Dystrophy Association
|
Nov 29, 2021 |
|
13: Advocating for Patients and Families Affected by Cold Agglutinin Disease
|
Nov 18, 2021 |
|
12: Kamada CEO Amir London Discusses the Company's Work on AATD Therapies
|
Nov 09, 2021 |
|
11: Endocrine Surgeon Dr. Haggi Mazeh Describes the Challenges of Treating MTC
|
Nov 03, 2021 |
|
10: Harsha K. Rajasimha, PhD, on Making Clinical Trials More Inclusive
|
Oct 26, 2021 |
|
9: Yale University professor Dr. Naftali Kaminski discusses a new consortium for pulmonary fibrosis with senior correspondent Larry Luxner
|
Oct 21, 2021 |
|
8: Durhane Wong-Rieger, PhD, Discusses the Challenges Faced by Rare Disease Patients in Canada
|
Oct 13, 2021 |
|
7: A Discussion on Medullary Thyroid Carcinoma With Dr. David Goldenberg
|
Oct 06, 2021 |
|
The Pursuit of Redosable Gene Therapies for Hemophilia with Dr. Doug Kerr
|
Sep 24, 2021 |
|
Perspectives on Long Chain Fatty Oxidation Disorder With Dr. Jerry Vockley
|
Sep 23, 2021 |
|
6: Dr. Hagit Baris-Feldman Discusses Israel's Burgeoning Role in Rare Disease Clinical Research
|
Sep 22, 2021 |
|
5: Dr. Noah Greenspan Discusses on the Diagnosis and Treatment of Patients With PAH
|
Sep 17, 2021 |
|
Dr. Barry Byrne on Recent Developments in Pompe Disease
|
Sep 13, 2021 |
|
4: Dr. Eric Olson Discusses the Use of Gene Therapy in the Treatment of Duchenne Muscular Dystrophy
|
Sep 08, 2021 |
|
3: An Interview With Dr. Edward Neilan, Chief Medical Officer at NORD
|
Sep 07, 2021 |
|
An Update on LAL-D With Dr. Paul Martin of Nationwide Children's Hospital
|
Sep 01, 2021 |
|
Insights From Dr. Noah Greenspan: Diagnosing and Treating IPF
|
Sep 01, 2021 |
|
Advocating for People With Gastrointestinal Stromal Tumor
|
Aug 31, 2021 |
|
2: Dr. Mark Brantly on Treating AATD and the Work of the Alpha-1 Foundation
|
Aug 17, 2021 |
|
1: Ultragenyx CMO Dr. Camille Bedrosian Discusses the First FDA-Approved Treatment for LCFAOD
|
Aug 11, 2021 |