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Ask Grumpy

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Helpless Hydrangea 6:24

15 hari yang lalu6:24

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Grumpy helps a reader choose the best hydrangea for their hometown. Plus, Grumpy’s gripe of the week. You can find us online at southernliving.com/askgrumpy Ask Grumpy Credits: Steve Bender aka The Grumpy Gardener - Host Nellah McGough - Co-Host Krissy Tiglias - GM, Southern Living Lottie Leymarie - Executive Producer Michael Onufrak - Audio Engineer/Producer Isaac Nunn - Recording Tech Learn more about your ad choices. Visit podcastchoices.com/adchoices…

Rare Care Podcast

Beranda serial•Feed

Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.

183 episode

#Science #Fitness #Medicine #Rare Care

Rare Care Podcast

updated 3 hari yang lalu

Beranda serial•Feed

Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.

183 episode

#Science #Fitness #Medicine #Rare Care

Semua episode

Rare Care Podcast

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173: An Interview With Amyloidosis Patient Dan Lier, a Partner With the Nonprofit Group 'Somebody To Talk To' 10:46

3 hari yang lalu10:46

10:46

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews amyloidosis patient and former basketball player Dan Lier, a partner with the nonprofit group Somebody To Talk To, about his new "Rare Disease Playbook."

Rare Care Podcast

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172: An Interview With Huntington Disease Patient and Advocate Lauren Holder of Help 4 HD 12:25

9 hari yang lalu12:25

12:25

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lauren Holder, an activist and patient with Huntington disease, as well as producer and host of the podcast series Help 4 HD Live.

Rare Care Podcast

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171: An Interview WIth Antonella Favit-Van Pelt, MD, PhD, on Neuromodulation to Treat Multiple Sclerosis 15:44

13 hari yang lalu15:44

15:44

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antonella Favit-Van Pelt, MD, PhD, chief medical officer at Helius Medical, on the potential of neuromodulation to treat people with multiple sclerosis.

Rare Care Podcast

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170: An Interview With Joyce Kullman, Executive Director of the Vasculitis Foundation 12:09

20 hari yang lalu12:09

12:09

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Joyce Kullman, executive director of the Vasculitis Foundation, duirng Vasculitis Awareness Month.

Rare Care Podcast

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169: An Interview With Chris Lewis, Son of Famous Comedian Jerry Lewis 13:35

20 hari yang lalu13:35

13:35

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Chris Lewis, whose father, Jerry Lewis, was not only among the most famous comedians of the 20th century but also a tireless advocate for people with muscular dystrophy.

Rare Care Podcast

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170: An Interview With Chris Lewis, Son of Famous Comedian Jerry Lewis 13:35

20 hari yang lalu13:35

13:35

Rare Care Podcast

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168: An Interview WIth Lisa Butler, CEO of the GBS-CIDP Foundation 12:34

28 hari yang lalu12:34

12:34

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Butler, CEO of the GBS-CIDP Foundation, on what her organization is doing for patients with chronic inflammatory demyelinating polyneuropathy (CIDP).

Rare Care Podcast

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167: An Interview With MDA Patient Advocate Donavon Decker, WInner of the 2025 MDA Legacy Award for Community Impact in Research 13:19

4 weeks yang lalu13:19

13:19

Larry Luxner, senior correspondent for Rare Disease Advisor, talks to Donavon Decker, who has limb-girdle muscular dystrophy. Decker is the winner of the 2025 MDA Legacy Award for Community Impact in Research.

Rare Care Podcast

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166: An Interview With MDA 2025 Patient Ambassador Lily Sander 14:51

6 weeks yang lalu14:51

14:51

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews 17-year-old Lily Sander with Charcot-Marie-Tooth disease. The Muscular Dystrophy Association has named Sander its 2025 MDA Patient Ambassador.

Rare Care Podcast

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165: An Interview With Duchenne Expert Katherine Mathews, MD, of the University of Iowa 11:25

7 weeks yang lalu11:25

11:25

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katherine Mathews, MD, winner of the Muscular Dystrophy Association's 2025 Legacy Award for Achievement in Clinical Research for her contributions to understanding and treating genetic disorders affecting the neuromuscular system.…

Rare Care Podcast

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164: An Interview With Generalized Pustular Psoriasis Expert Arash Mostaghimi, MD 9:09

7 weeks yang lalu9:09

9:09

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Arash Mostaghimi, MD, an associate professor of dermatology and a practicing physician at Boston's Brigham and Women's Hospital. Dr. Mostaghimi is a recognized expert on generalized pustular psoriasis (GPP).

Rare Care Podcast

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163: An Interview With Clinical Hematologist and Professor Dr. Luke Chen 16:04

8 weeks yang lalu16:04

16:04

Rare Disease Advisor correspondent Tori Rodriguez interviews clinical hematologist and professor Luke Chen, MD, about IgG4-related disease and how it mimics various malignancies.

Rare Care Podcast

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162: An Interview With John Anderson, MD, Expert on Hereditary Angioedema 10:32

10 weeks yang lalu10:32

10:32

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Anderson, MD, chief research officer at AllerVie Clinical Research, on the complexities of diagnosing and treating hereditary angioedema.

Rare Care Podcast

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161: An Interview With Retired NFL Athlete and Amyloidosis Patient Advocate Art Still 17:03

11 weeks yang lalu17:03

17:03

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Art Still, former defensive end for the Kansas City Chiefs and an NFL Hall of Famer who's now a patient advocate dedicated to raising awareness about amyloidosis.

Rare Care Podcast

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160: An Interview With Heather Landau, MD, on the Latest Therapies for Amyloidosis 17:03

12 weeks yang lalu17:03

17:03

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews oncologist-hematologist Heather Landau, MD, of Sloan Kettering Memorial Cancer Center in New York City, for National Amyloidosis Awareness Month.

Rare Care Podcast

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158: An Interview With Hereditary Angioedema Expert Dr. Timothy Craig 14:19

13 weeks yang lalu14:19

14:19

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Timothy Craig, DO, a tenured professor of medicine, pediatrics and biomedical sciences at Pennsylvania State University in Hershey. Dr. Craig has been researching hereditary angioedema for 30 years.

Rare Care Podcast

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158: An Interview With Dr. Sangeetha Venugopal on the relationship between smoking and myelodysplastic syndromes (MDS) 12:08

14 weeks yang lalu12:08

12:08

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sangeetha Venugopal, MD, assistant professor of clinical medicine at the University of Miami's Sylvester Comprehensive Cancer Center. Dr. Venugopal speaks on how smoking worsens outcomes for patients with a group of blood cancers known as myelodysplastic syndromes (MDS).…

Rare Care Podcast

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157: An Interview With Andrea Renzi, a Patient Advocate for Women Affected by HDFN 12:15

15 weeks yang lalu12:15

12:15

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Renzi, a New Hampshire mother and patient advocate whose family has been affected by hemolytic disease of the fetus and newborn (HDFN).

Rare Care Podcast

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156: An Interview With Dr. James Bussel on Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT) 13:27

16 weeks yang lalu13:27

13:27

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews James Bussel, MD, emeritus professor of pediatrics, medicine, and obstetrics and gynecology at New York's Weill Cornell Medicine. The topic of their discussion is nipocalimab as a potential treatment for fetal and neonatal alloimmune thrombocytopenia (FNAIT).…

Rare Care Podcast

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155: An Interview With Rigoberto Garcia, Executive Director of the Hemophilia Foundation of Southern California 15:24

17 weeks yang lalu15:24

15:24

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rigoberto Garcia, executive director of the Hemophilia Foundation of Southern California, about the difficulty minorities—especially undocumented Hispanics—have in accessing treatment for their bleeding disorders.

Rare Care Podcast

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154: An Interview With AATD Patient Kristin Hatcher of the Global Liver Institute 13:16

18 weeks yang lalu13:16

13:16

Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Kristin Hatcher, director of pediatric and rare diseases at the Global Liver Institute. Hatcher has both alpha-1 antitrypsin deficiency (AATD) and Von Willebrand disease, a rare clotting disorder.

Rare Care Podcast

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153: An Interview With Terry Jo Bichell, PhD, Founder and Director of CombinedBrain 15:31

19 weeks yang lalu15:31

15:31

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Terry Jo Bichell, PhD, founder and director of CombinedBrain, which advocates for patients with 110 neurogenetic diseases. Dr. Bichell is part of a panel that's studying how the US Food and Drug Administration can do a better job of speeding up clinical trials and becoming more transparent about its decisions.…

Rare Care Podcast

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152: An Interview With Erin Collins, Founder of the Chasing Rainbows Foundation 15:23

20 weeks yang lalu15:23

15:23

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Erin Collins, founder of the Chasing Rainbows Foundation in North Carolina's Outer Banks. The charity raises awareness of HDFN and other rare pregnancy-related diseases.

Rare Care Podcast

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151: An Interview With NMOSD Expert Dean Wingerchuk, MD, of the Mayo Clinic 10:27

21 weeks yang lalu10:27

10:27

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dean Wingerchuk, MD, speaks on the potential for treating neuromyelitis optica spectrum disorder (NMOSD) with stem-cell therapy.

Rare Care Podcast

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150: An Interview With Beloved Huntington Disease Activist Jimmy Pollard 12:17

22 weeks yang lalu12:17

12:17

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jimmy Pollard, who for the past 38 years has advocated on behalf of people around the world affected by Huntington disease.

Rare Care Podcast

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149: An Interview With Clinical Psychologist Rosalind Kalb, PhD, of Can Do-MS 13:55

23 weeks yang lalu13:55

13:55

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews clinical psychologist Rosalind Kalb, lead senior programs consultant for Can-Do MS, a Colorado-based nonprofit health and wellness organization.

Rare Care Podcast

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148: An Interview With Huntington Disease Patient Activist Tanita Allen 11:16

23 weeks yang lalu11:16

11:16

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Tanita Allen, a Black woman with Huntington disease who has made it her mission to increase awareness about the disorder and its devastating impact on patients regardless of their racial or ethnic background.

Rare Care Podcast

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147: An Interview With Jean Elwing, MD, a Pulmonary Hypertension Expert at the University of Cincinnati 13:46

25 weeks yang lalu13:46

13:46

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jean Elwing, MD, a professor of medicine and director of the Pulmonary Hypertension Program at Ohio's University of Cincinnati.

Rare Care Podcast

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146: An Interview With Payel Gupta, MD, on the Importance of Social Media in Healthcare 9:07

26 weeks yang lalu9:07

9:07

Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Payel Gupta, MD, on social media platforms such as TikTok, Facebook and YouTube, and their importance in reaching today's public—and fighting online misinformation.

Rare Care Podcast

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145: An Interview With Sandy Siegel, Founder and President of the Siegel Rare Neuroimmune Association 16:10

27 weeks yang lalu16:10

16:10

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sandy Siegel, founder and president of the Siegel Rare Neuroimmune Association. Siegel started the charity 30 years ago with his wife, Pauline, after she was diagnosed with transverse myelitis. After Pauline's death in 2017, the organization expanded to include five other rare neuroimmune diseases including neuromyelitis optica spectrum disorder (NMOSD).…

Rare Care Podcast

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144: An Interview With Anastasia Vishnevetsky, MD, MPH, on the Use of Cannabis to Treat NMOSD 16:32

28 weeks yang lalu16:32

16:32

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Anastasia Vishnevetsky, MD, MPH, of Massachusetts General Hospital and Harvard Medical School. Dr. Vishnevetsky is heading a groundbreaking clinical trial of the cannabinoid spray nabiximols in treating the symptoms of NMOSD.

Rare Care Podcast

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143: An Interview With Ignacio Muñoz-Sanjuan, PhD, President and Founder of Factor-H 16:07

29 weeks yang lalu16:07

16:07

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ignacio Muñoz-Sanjuan, PhD, the president and founder of Factor-H—a Los Angeles-based nonprofit organization that works to alleviate extreme poverty among people with Huntington disease in Venezuela, Colombia, and Peru.

Rare Care Podcast

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142: An Interview With Amy Case, MD, Chief Medical Officer of the Pulmonary Fibrosis Foundation 16:30

29 weeks yang lalu16:30

16:30

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Amy Case, MD, chief medical officer of the Pulmonary Fibrosis Foundation, about the importance of passing the bipartisan Supplemental Oxygen Access Reform (SOAR) Act, which is currently stalled in Congress.

Rare Care Podcast

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141: An Interview WIth Steve Van Wormer, Cofounder and Director of the Phaware Global Association 12:02

31 weeks yang lalu12:02

12:02

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Steve Van Wormer, cofounder and director of the Phaware Global Association. Van Wormer became a patient advocate after his late son, Lucas, was diagnosed with pulmonary hypertension at age 4.

Rare Care Podcast

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140: An Interview With Victor Test, MD, Chair of the Pulmonary Vascular Disease Program at Texas Tech School of Medicine in Lubbock 12:49

32 weeks yang lalu12:49

12:49

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Victor Test, MD, an expert in pulmonary arterial hypertension (PAH). Dr. Test is a professor of medicine and chair of the pulmonary vascular disease program at Texas Tech School of Medicine in Lubbock.

Rare Care Podcast

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139: An Interview With Drew Harris, MD, Expert on Black Lung Disease 12:55

33 weeks yang lalu12:55

12:55

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pulmonologist Drew Harris, MD, an associate professor of medicine at the University of Virginia in Charlottesville. Dr. Harris is also medical director of the Black Lung Program at Stone Mountain Health Services, in the heart of southwestern Virginia's coal-mining industry.…

Rare Care Podcast

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138: An Interview With Mahesh Desai, PhD, of the Luxembourg Institute of Health 9:47

35 weeks yang lalu9:47

9:47

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mahesh Desai, PhD, of the Luxembourg Institute of Health’s Department of Infection and Immunity. Dr. Desai discusses how healthy gut bacteria may reduce the side effects of chemotherapy in cancer patients.

Rare Care Podcast

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137: An Interview With Karin Hoelzer, DVM, PhD, Senior Director of Policy and Regulatory Affairs at NORD 9:44

36 weeks yang lalu9:44

9:44

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Karin Hoelzer, DVM, PhD, senior director of policy and regulatory affairs at the National Organization for Rare Disorders (NORD). Dr. Hoelzer discusses the importance of convincing the US Congress to renew the Rare Pediatric Disease Priority Review Voucher Program, which is set to expire on September 30, 2024.…

Rare Care Podcast

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136: An Interview With Susan Ward, PhD, Founder and Executive Director of the Collaborative Trajectory Analysis Project (cTAP) 15:32

39 weeks yang lalu15:32

15:32

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Susan Ward, PhD, founder and executive director of the Collaborative Trajectory Analysis Project (cTAP), which seeks to broaden patient eligibility for clinical trials in Duchenne muscular dystrophy.

Rare Care Podcast

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135: An Interview With Taylor Kane, Founder and Executive Director of 'Remember the Girls' 11:15

40 weeks yang lalu11:15

11:15

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Taylor Kane, founder and executive director of 'Remember the Girls.' The charity advocates for female carriers of X-linked rare disorders including Duchenne muscular dystrophy and hemophilia.

Rare Care Podcast

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134: An Interview With Dr. Jeffrey A. Cohen of the Cleveland Clinic on Cellular Therapies for MS 10:25

41 weeks yang lalu10:25

10:25

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews neurologist Jeffrey A. Cohen, MD, of Ohio's Cleveland Clinic on the latest developments in cellular therapies to treat multiple sclerosis.

Rare Care Podcast

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133: An Interview With Maureen Juip, Secretary of the Friedreich's Ataxia Research Alliance and Mother of 2 Children With FA 8:58

42 weeks yang lalu8:58

8:58

Rare Care Podcast

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133: An Interview With Jacquelyn Bainbridge, DPharm, of the University of Colorado, on Cannabis Therapy for MS 12:20

43 weeks yang lalu12:20

12:20

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jacquelyn Bainbridge, DPharm, a neurology professor at the University of Colorado in Aurora, on the benefits of medical cannabis in treating multiple sclerosis.

Rare Care Podcast

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132: An Interview With Michelle C. Werner, CEO of Alltrna 14:44

44 weeks yang lalu14:44

14:44

Rare Care Podcast

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131: An Interview With Dr. Flavia Nelson of the University of Miami on Treatment Options for NMOSD 13:02

45 weeks yang lalu13:02

13:02

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Flavia Nelson, MD, director of the Multiple Sclerosis Center of Excellence at the University of Miami in Florida, on the difficulties of diagnosing neuromyelitis optica spectrum disorder.

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