Wednesday, 25 September 2024

HSP on Podcasts

HSP features in two different podcasts, which you might be interested in listening to. Both are episodes of the Rare on Air series, created by Eurordis.

This link takes you to the podcast page: https://www.eurordis.org/rare-on-air/

The page will open episodes in Spotify, but you can also subscribe to this and listen through other podcast providers.

The two episodes are:

Putting Patient Journeys into Action, from 12th September.

In this episode Lori Renna Linton talks about the HSP patient journey which she and I put together, synthesising the results of my surveys over time into a practical document to help people with HSP be able to highlight key issues in conversations with healthcare professionals.

https://open.spotify.com/episode/3z8u7BTx9HW2qvTN2rO7ZF?go=1&sp_cid=f4723d1b26e521993d54a2845332ea08&utm_source=embed_player_p&utm_medium=desktop

Marina Zapparoli Manzoni on the power of finding and building a community, from 27th June.

In this episode Marina (chair of EuroHSP) talks about her families journey with HSP, and how it has moved her to advocate for HSP through EuroHSP and the various national HSP groups. The voice from these groups helps move researchers towards improving their understanding of HSP and exploring treatment and support options that are useful for people who have HSP.  


If you prefer to access these in a different way you can also access through YouTube:



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