Rare Disease Day special episode: Reclaiming the rare disease patient’s voice

P4A Let's Talk Rare: The Life Science Podcast

Contenu fourni par Partners4Access. Tout le contenu du podcast, y compris les épisodes, les graphiques et les descriptions de podcast, est téléchargé et fourni directement par Partners4Access ou son partenaire de plateforme de podcast. Si vous pensez que quelqu'un utilise votre œuvre protégée sans votre autorisation, vous pouvez suivre le processus décrit ici https://fr.player.fm/legal.

3+ y ago 36:55

M4A•Maison d'episode

In this Rare Disease Day special episode, we focus on the impact of COVID -19 on rare disease patients. Some of the key challenges for patients during this pandemic include disruption in their access to treatments, struggle to continue participation in clinical trials, lack of access to vital equipment such as PPE (Personal Protective Equipment) and also to healthcare personnel. We speak to Genetic Alliance chief executive officer Jayne Spink, patient Nicola Whitehill and Danielle Myers, mother and carer of patient 10 year old Dylan Myers.

Presenter: Aparna Krishnan

Contributors: Jayne Spink, Nicola Whitehill and Danielle Myers

Producer: Aparna Krishnan

More information on :

Genetic Alliance can be found at https://geneticalliance.org.uk/

Nicola Whitehill's blog: https://blog.raynaudsscleroderma.co.uk/2017/04/scleroderma-raynauds-rare-disease.html?m=1

Dylan Myers' story: https://m.facebook.com/dylansstory/ and https://www.treeofhope.org.uk/dylansstory/

93 episodes

#Science #Partners4Access #Weekly Roundup