In this episode of Rare Together, we’re joined by two people affected by rare diseases: Jan, living with Burning Mouth Syndrome in Iowa in the USA, and Amanda living with Relapsing Polychondritis, a rare autoimmune condition, in Okehampton, in the United Kingdom.
Join us in this insightful conversation as we learn more about their rare conditions and how their day-to-day lives have been impacted since their symptoms appeared. We delve into the importance of support; from online communities to direct care from friends and family, and, we chat in detail about the wider repercussions rare conditions can have relationships, socialisation and family dynamics.
Our host today as always in the wonderful Andrew Grant. Andrew is an experienced medical research consultant with LDA Research, an international medical market research organisation working the pharmaceutical industry and medical device sector.
If you would like to share your story and help raise awareness of a rare condition you’re affected by, please apply to be part of the podcast here. Alternatively, join the conversation online by becoming a member of our private Facebook group, Rare Disease Network, where we’ve created a community of people from across the globe affected by rare diseases.
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You can check out Singing for Wellness here.
Audio: Spirit Blossom by Roman Belov