Season 5, Episode 5: In Conversation with Laura Romano
Rare Disease Week Special Episode!!!
→ Who?: Laura Romano, Program Manager for @hearusyarr and a rare disease patient.
→ Rare Disease Connection: Laura oversees the young adult rare and is a indvidual with Classical-like Ehlers-Danlos Syndrome (clEDS).
→ What is YARR?: Young Adult Rare Representatives (YARRs) are highly motivated rare disease community members between 16 and 30 years old. The main purpose of YARR is to instill confidence in the next generation of rare disease advocates.
→ What is Classical-like Ehlers-Danlos Syndrome (clEDS): a heritable connective tissue disorder that causes severe skin hyperextensibility, velvety skin texture, generalized joint hypermobility, and easy bruising. clEDS is an ultra-rare disorder that affects less than 1 in 1 million people.
→ Where to find Laura and YARR?:
https://everylifefoundation.org/young-adult-representatives/
https://everylifefoundation.org/
sharingmystripes (Laura) on Instagram
hearusyarr (YARR) on Instagram
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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #ClassicalEDS #clEDS #EhlersDanlosSyndrome #CollagenDisorder #HypermobileJoints #SkinHyperextensibility #GeneticCondition #RareDisorder #ConnectiveTissueDisorder #EDSTypeI