60 acast.com Rare Horizons https://shows.acast.com/rare-horizons-podcast en Share4Rare - Fundación Weber research,medicine,disease,health,insights,SJD Research Foundation,patient,Foundation,Share4rare,Weber Foundation Share4Rare - Fundación Weber

Hosted on Acast. See acast.com/privacy for more information.

]]>

Hosted on Acast. See acast.com/privacy for more information.

]]> false Share4Rare - Fundación Weber info+65f0469593f24a00182ef951@mg-eu.acast.com 65f0469593f24a00182ef951 rare-horizons-podcast episodic https://assets.pippa.io/shows/cover/1710245215757-7a5ddcfb754b5a4ad2adcd783cbbcc7e.jpeg https://shows.acast.com/rare-horizons-podcast Rare Horizons Biobanks: Research allies | Rare Horizons Biobanks: Research allies | Rare Horizons Fri, 22 Nov 2024 09:38:36 GMT 35:24 6740511ca38318e3fe78cc2a false https://shows.acast.com/rare-horizons-podcast/episodes/biobanks-research-allies-rare-horizons 6740511ca38318e3fe78cc2a 65f0469593f24a00182ef951 biobanks-research-allies-rare-horizons full 1 3 https://www.share4rare.org/registration/s4r

Hosted on Acast. See acast.com/privacy for more information.

]]> https://www.share4rare.org/registration/s4r

Hosted on Acast. See acast.com/privacy for more information.

]]> Undiagnosed: navigating uncertainty | Rare Horizons Undiagnosed: navigating uncertainty | Rare Horizons Tue, 14 May 2024 08:45:27 GMT 25:17 664324a8914756001259c6bd false https://shows.acast.com/rare-horizons-podcast/episodes/undiagnosed-navigating-uncertainty-rare-horizons 664324a8914756001259c6bd 65f0469593f24a00182ef951 undiagnosed-navigating-uncertainty-rare-horizons full 1 2 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.


If you have a rare disease or are a caregiver, consider getting registered in Share4Rare: https://www.share4rare.org/registration/s4r

Hosted on Acast. See acast.com/privacy for more information.

]]> 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.


If you have a rare disease or are a caregiver, consider getting registered in Share4Rare: https://www.share4rare.org/registration/s4r

Hosted on Acast. See acast.com/privacy for more information.

]]> The path to diagnosis | Rare Horizons The path to diagnosis | Rare Horizons Tue, 12 Mar 2024 12:13:56 GMT 19:13 65f0470593f24a00182f1ac9 false https://shows.acast.com/rare-horizons-podcast/episodes/rare-horizons-path-to-diagnosis 65f0470593f24a00182f1ac9 65f0469593f24a00182ef951 rare-horizons-path-to-diagnosis full 1 1 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.

If you have a rare disease or are caring for someone affected by one, consider getting registered in Share4Rare: https://www.share4rare.org/registration/s4r

Hosted on Acast. See acast.com/privacy for more information.

]]> 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.

If you have a rare disease or are caring for someone affected by one, consider getting registered in Share4Rare: https://www.share4rare.org/registration/s4r

Hosted on Acast. See acast.com/privacy for more information.

]]>