Candid conversations with leading doctors, patients, researchers, and families in rare disease communities.
…
continue reading
1
Parenting a Rare Disease Child with Rare Mamas Founder Nikki McIntosh
36:51
36:51
Redă mai târziu
Redă mai târziu
Liste
Like
Plăcut
36:51
Nikki McIntosh, the founder of Rare Mamas, believes there is a brave fighter inside every rare-disease mother. By sharing her learnings, tips, and resources, Nikki wants to empower other rare disease parents to shift from distress to prowess. In this conversation, we speak with Nikki about the path to diagnosis, family dynamics, parenting, and gett…
…
continue reading
1
Radical Optimism in Rare Disease with Dr. Kathryn Swoboda
1:03:31
1:03:31
Redă mai târziu
Redă mai târziu
Liste
Like
Plăcut
1:03:31
In this episode we speak with Dr. Kathryn Swoboda, a neurologist at Massachusett's General Hospital specializing in Spinal Muscular Atrophy is in conversation with co-host Artemis Joukowsky her patient of over 20 years. Today's show focuses on SMA, a rare neuromuscular disease. We track a twenty-year journey leading to three breakthrough treatments…
…
continue reading
1
Introducing The Genetics of Hope Podcast
2:19
2:19
Redă mai târziu
Redă mai târziu
Liste
Like
Plăcut
2:19
From True Spectrum Media this is the Genetics of Hope podcast, a candid conversation series with the doctors, patients, researchers, families and activists who make up this Rare Disease and Biotech community of goodness. This is your host Cray Novick, and Co-host Artemis Joukowsky. We started a storytelling journey looking at how breakthrough medic…
…
continue reading