Once Upon A Gene Members

Rohan Seth Cofounder at Clubhouse 👋🏽 (this app!) and Lydian Accelerator 🧬 (non pr... @rohan

Onno Faber Co-founder and CEO of Rarebase, working on accelerating therapeutic R&... @onno

Bo Bigelow Co-founder @ The Disorder Channel and DISORDER: The Rare Disease Film... @bobigelow

Nicole Henwood Mother, donor, physician, president, and CEO - NF2 BioSolutions Rare... @nicolenf2

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Mariah Gillaspie THAP12 Ultra-Rare disease advocate for my daughters, Emma and Abby - F... @mariahgillaspie

Spela Mirosevic Researcher and a mother trying to find treatment solutions for her son... @spelam

Luke Rosen www.KIF1A.org @lukerosen

Effie Parks ✨Podcaster✨ 🎤Host of Once Upon A Gene 📺 Co-host Once Upon A Gene TV... @onceuponagene

Seth Rotberg TEDx speaker 🗣 Community connector 🤝 Podcast speaker & storyteller 🎤 📖... @srotberg15

Whitney Lavender I’m a wife, momma to 2 awesome boys, 2 bonus daughters, business owner... @whitscomplex

Debbie Drell 🔊 #DMV 💃🏻 Nonprofit director 🦓 rare disease advocate 🥦 vegan AF 🐄... @debbie_in_dc

Jason Colquitt CEO, Founder of Across Healthcare - 22 yr health tech veteran with a r... @across

Jennifer Robin Kulik A curious human on the journey of life 🌎 Other stuff: Founder, Mendin... @jenniferrobin

Michelle Maquinalez I have multiple chronic medical conditions including eds, gastroparesi... @michellemaq

Nicole Johnson Hi my name is Nicole johnson I help women with disability with th... @nicolj2345

Erica Stearns Researcher, podcaster, advocate, disabled adult, & mom of two rare hea... @atypicaltruth

Courtney Boggs Rare disease mom and advocate. Cofounder Cure Mito Foundation. @hope4eb

Caitlin Nichols Biomedical scientist & Research Director @ AllStripes @caitlinanichols

Bud Hager @kartoffelfam

Bahar Etminan @baharetminan

Nicole Tibanlombo @tibanlombo

Christine Von Raesfeld Join me for an in-person networking event in Santa Clara Tuesday, 11/1... @cvonraesfeld

Michelle Fruhschien Mama•wifey•teacher by day-blogger by night... @mamabearforrare

Michelle Davis @michelledaviskc

Charlene Fernandez 🚀 Rare disease research and patient advocacy How can I help you? 💊... @ccfernandez

Matt Harline An artist 🎨 from California, USA 🇺🇸. I am working on a series of pai... @mjharline

Elisabeth Parker Founder of the Move2Advocate Project: I create meaningful connection,... @elisabethparker

Little Bear Painter | future dentist | 🇲🇦🇺🇦| art lover🎭 “No one can take away... @littlebear000

Sandra Lambert @sandra734

Kevin Freiert I am committed to empowering patients to shape the future of medicine.... @k_salemoaks

Deborah Vick Helping you live YOUR BEST LIFE TODAY through the Power of Perseveranc... @forwardrolling

Jerry Williams He/Him/His - I am living with the rare disease dermatomyositis and the... @myositissupport

Parvathy Krishnan 🧬 Speaker, Rare/Ultra rare disease Advocate, Patient 📚SME caregiving,... @medicalmomma

Annette Rodriguez @annetterodsatx