A podcast focused on rare disease research, created by Share4Rare, an initiative by the Sant Joan de Déu Research Foundation that promotes collaborative research and connects patients and families affected by rare diseases worldwide, and by the Weber Foundation. In each episode, we delve into various topics related to advances in rare disease research, featuring expert insights, patient stories, and family perspectives. Let’s explore the Rare Horizons!<hr><p style='color:grey; font-size:0.75em;'> Hosted on Acast. See <a style='color:grey;' target='_blank' rel='noopener noreferrer' href='https://acast.com/privacy'>acast.com/privacy</a> for more information.</p>
Rare Horizons
Claim This Podcastby Share4Rare - Fundación Weber
3 episodes
Updated Weekly
Accepts GuestsHas SponsorsLocation 🇪🇸
Podcast Overview
A podcast focused on rare disease research, created by Share4Rare, an initiative by the Sant Joan de Déu Research Foundation that promotes collaborative research and connects patients and families affected by rare diseases worldwide, and by the Weber Foundation. In each episode, we delve into various topics related to advances in rare disease research, featuring expert insights, patient stories, and family perspectives. Let’s explore the Rare Horizons!<hr><p style='color:grey; font-size:0.75em;'> Hosted on Acast. See <a style='color:grey;' target='_blank' rel='noopener noreferrer' href='https://acast.com/privacy'>acast.com/privacy</a> for more information.</p>
Language
🇺🇲
Publishing Since
3/12/2024
1 verified contact email on file for Rare Horizons
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Recent Episodes
November 22, 2024
Biobanks: Research allies | Rare Horizons
Biobank experts explore the game-changing potential of these research allies in overcoming limited sample sizes and yielding more conclusive rare disease research results.
May 14, 2024
Undiagnosed: navigating uncertainty | Rare Horizons
<p>Not having a diagnosis delays the possibility of receiving appropriate and effective treatments. It also causes uncertainty and fear, which negatively influences the mental health of patients and families. Luckily, new scientific disciplines, techniques, networks and tools are emerging that shorten the waiting times more and more. Let's explore this further in today's episode.</p><br><p>If you have a rare disease or are a caregiver, consider getting registered in Share4Rare: <a href="https://www.share4rare.org/registration/s4r" rel="noopener noreferrer" target="_blank">https://www.share4rare.org/registration/s4r</a></p><br /><hr><p style='color:grey; font-size:0.75em;'> Hosted on Acast. See <a style='color:grey;' target='_blank' rel='noopener noreferrer' href='https://acast.com/privacy'>acast.com/privacy</a> for more information.</p>
March 12, 2024
The path to diagnosis | Rare Horizons
<p>Unlike more recurrent diseases, most rare diseases do not exhibit clearly defined clinical manifestations, making it difficult to obtain an accurate diagnosis. About 80% of these diseases are of genetic origin, underscoring the importance of identifying the specific gene or genes that may be mutated. In this episode, we discuss how technology and professional networks can help improve and speed up the diagnosis of rare diseases, and the efforts being made to ensure early and equal diagnosis for everyone.</p><p>If you have a rare disease or are caring for someone affected by one, consider getting registered in Share4Rare: <a href="https://www.share4rare.org/registration/s4r" rel="noopener noreferrer" target="_blank">https://www.share4rare.org/registration/s4r</a></p><br /><hr><p style='color:grey; font-size:0.75em;'> Hosted on Acast. See <a style='color:grey;' target='_blank' rel='noopener noreferrer' href='https://acast.com/privacy'>acast.com/privacy</a> for more information.</p>
3 total episodes available
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Frequently asked questions
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- What is Rare Horizons?
- How often does this podcast release new episodes?
This podcast updates weekly.
- Where can I listen to this podcast?
This podcast is available on 7 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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