“RARE/D”: A NEW RARE DISEASE PODCAST

RARE/D is a new podcast series that started on December 29. On the podcast, topics such as genome editing and health care are being discussed by a multidisciplinary team.

The series are now available across many platforms including iTunes and Spotify. Find the episodes here.

Behind the podcast series is the the Whitworth group consisting of Mariangels Ferrer-Duch, Nichola Garde, Nick Jordan, Rhona MacLeod, Romona Moldovan, Jay Roche and Fiona Ulph. Combined, they have expertise in media, communications, psychology, genetic counselling, patient and involvement, narrative practices, rare disease and qualitative research methods.

If you attended any of our conferences some of the names are familiar to you. At our conference 2019 in Bucharest both Mariangels and Ramona were speakers. The two psychologists are highly involved in the Huntington community.

On the podcast we can hear them speak about topics such as genome editing, ethical dilemmas and health care.

LIVE PODCAST

On Rare Disease Day, February 29, the first RARE/D live event will be taking place at The Whitworth Art Gallery in Manchester. Throughout the day, a lot of exciting activities will be taking place.

More information about the event: RARE/D LIVE


Listen to the first two episodes here:

EPISODE 1: RARE OPPORTUNITIES AND HOW WILL THE 100,000 GENOME PROJECT CHANGE HEALTH CARE?

EPISODE 2: ETHICAL DILEMMAS IN GENOMIC TESTING: RARE OR NOT SO RARE?