You, Me & Rare Disease ep. 1 of 2

Welcome to You, Me & Rare Disease episode 1 of 2 – as a special breakout theme to You Me & Muscular Dystrophy to acknowledge rare diseases day 28th of February.We begin this fabulous series with with a discussion with from Nicole Millis, CEO of Rare Voices Australia. Kathleen Benham, Kelly Berger, Avery Robertsand Leah Alstin share personal insights on living with the rare conditions of endocrine cancer, congenital muscular dystrophy, and Frederichs Ataxia. It highlights the systemic challenges faced by rare disease patients, the importance of awareness and advocacy in rare diseases.The following 2 episodes provide great perspectives from fabulous people. LINKS PER GUESTNicole MillIS, CEO,  Rare Voices Australia https://rarevoices.org.au https://www.instagram.com/rarevoicesaustralia/ University of New South Wales - Rare Disease Education Program - https://www.unsw.edu.au/Elhers Danlos Syndrome - https://www.ehlers-danlos.com/ Australian Government - Rare Disease Policy - https://www.health.gov.au/  Kathleen Benham, Neuroendocrine Cancer https://neuroendocrine.org.au Elhers Danlos Syndrome - https://www.ehlers-danlos.com/  Kelly Berger and Avery Roberts, Congenital muscular dystrophy https://www.youtube.com/channel/UCwiodJfv-W6ZhMinq4Ft1Rw https://www.instagram.com/thewheeltalkpodcast/ Leah Alstin, Friedrich’s Ataxiahttps://www.instagram.com/being_leah/   MUSIC Music: Without You by Declan DP License: https://license.declandp.info Free Download / Stream: https://audiolibrary.com.co/declan-dp...Music promoted by Audio Library:    • DAILY No Copyright For You – Without You b...   CHAPTERS00:00 Understanding Rare Diseases01:11 What is a rare disease?02:09 The Role of Rare Voices Australia04:54 Educating medical clinicians06:39 What is the definition of the term disease?08:10 Rare diseases day - raising awareness of rare disease to policymakers12:52 What is Neuroendocrine Cancer ?14:52 Gaslighting and the need for training in the medical profession18:16 Impact of her rare disease by Kathleen20:33 The importance of a rare disease day from Kathleen 24:57 Congenital muscular dystrophy27:24 Life with a rare disease by Kelly and Avery27:53 The impacts of rare disease for Kelly and Avery30:26 The importance of rare disease day by Kelly and Avery33:40 Friedrichs Ataxia38:45 The impacts of living with rare disease by Leah