We talk to rare disease experts about treatments, trials, and new developments, and rare disease patients share their experiences and advice for staying positive in the face of diagnosis. Learn more about the RareShare.org community, and how you can get involved. Get in touch if you are an expert or patient who would like to be on the podcast! Email us at rgpodcast@raregenomics.org
Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation
Claim This Podcastby Rare Genomics Institute
4.3(3 reviews)
29 episodes
Updated Inactive
Accepts GuestsHas SponsorsLocation 🇺🇸
Podcast Overview
We talk to rare disease experts about treatments, trials, and new developments, and rare disease patients share their experiences and advice for staying positive in the face of diagnosis. Learn more about the RareShare.org community, and how you can get involved. Get in touch if you are an expert or patient who would like to be on the podcast! Email us at rgpodcast@raregenomics.org
Language
🇺🇲
Publishing Since
2/13/2015
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Recent Episodes
February 24, 2024
Genetic Counseling in Rare Diseases
<p>Two genetic counselors, Sasha Bauer and Chloe Cheung, discuss how genetic counseling can help rare disease patients understand and cope with their condition. While genetic information does not always lead to clear therapeutic options, the knowledge gained is empowering.</p>
August 8, 2023
Jimmy Lin RareShare Podcast
<p>Rare Genomics Institute founder and president, Dr. Jimmy LIn, discusses health equity and rare diseases in this episode of the RareShare podcast series.</p>
February 7, 2022
Clinic for Special Children
<p>Serving the Amish and Mennonite communities in Central Pennsylvania, the Clinic for Special Children provides counseling and healthcare for rare disorders affecting the local population. In doing so, it has become a recognized leader in the treatment and scientific understanding of conditions such as Maple Syrup Urine Disease. Listen to an in-depth, fascinating story of the clinic, its goals, accomplishments and challenges as told by current staff members. You'll almost certainly agree that it is truly a special place!</p>
29 total episodes available
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Frequently asked questions
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- What is Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation?
- How often does this podcast release new episodes?
This podcast updates inactive.
- Where can I listen to this podcast?
This podcast is available on 8 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
Yes, this podcast regularly features guests.
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