Rare Disease Community Members

Ethan Perlstein cure guide, biotech builder, solo VC, founder/CEO @ Perlara PBC (YCW16... @ethan

Jeff Reynolds Co-founder of The Champ Foundation, fighting against Pearson syndrome @jeffreynolds

Linda Nguyen 👩🏻‍💼📑Business Development @ Schrödinger in NYC | Former External Innov... @mochiphd

Mike Graglia Syngap.fund/Mike @graglia

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

Kasey Woleben Rare disease mom and advocate Cofounder/Cure MITO Foundation/supports... @kaseyw

. @9

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

Noor Rai doctor @royalpapworth | building @neurochase | ondeck deeptech fellow... @nr

Lisa Manaster CO-founder and President of the CACNA1A Foundation-working with a sens... @lisahman

Cathy Smith 📍 Canada 🇨🇦 🍁 🧠HBSc: Behavioural Neuroscience by education (Undergr... @chiorisi

Tee Faircloth Rural Digital Health Founder/CEO CCI (Coordinated Care Inc) Rural Heal... @teefaircloth

Sarah R. Hengel PhD I have a PhD in Biochemistry and I’m real obsessed with understanding... @sarahrhengel

Dr. Van Duesterberg ✨I’m a patient scientist that heals people. 🔬🦾Scientist, optical/aut... @vanduesterberg

Casey McPherson Entreprenuer, musician, and father of two daughters - my youngest, Ros... @caseymcpherson

Dr. Reiersen 🗣Reiersen = “RAY-er-sen” 🧠Psychiatrist ➡️ 🦠COVID scientist💊🩺 ********📰... @angelareiersen

Anna Adams 💗I am a Certified End of Life Doula Specialist and End of Life Doula I... @deathdoula

Jinette G. My mind’s vibe: “Don’t ever stop the music!” 📍- 🌏🇺🇳🏴‍☠️ 🤓 - 🇰🇷(beginn... @beingsimrun

Oli Rayner Interested in digital health and cures for rare diseases 🚀 I know a l... @olirayner

Kristen Lewis @misskristenl

Nancy Hill @nancypat80

Michelle Cannabis Consultant - focusing on family. Cannabis medical refugee. I... @bostonleaf

Inga Hofmann Physician, mom, coach, rare disease crusader, passionate about medicin... @ingahofmann

A.M. RIVERS I’m A.M. SEE& SHARE ➡️the #FogWATERHARVESTING techVideo IG/X⬅️W/👩🏾‍🚒🧑‍... @amrivers

Rasheera Dopson Disability Activist Author: Beauty with a Twist Speaker Intersectio... @rasheeradopson

Alaa Abdul Rahman Exploring this little world called clubhouse🌍 ✨Elementry Teacher 🧕🏾... @alaa.a

Nicole 🫶 MARRIED TO THE ONE AND ONLY BEAUTIFUL AMAZING GRACE💘🔒 You gotta be 2... @nickiiim

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

Joanna Mercado 🧬 Certified Genetic Counselor 🧬 Consejera Genética 🗣 She/Her/Ella 🇳🇮 N... @jomerc9

Chelsea McMahon 🚀 NASA-funded lunar ISRU researcher Co-founder of Cislune (lunar land... @chel-c

Heather Williams 🧬 Head of Projects, Clinical Data Mgmt | College Instructor | 🐾 🌱 ☕️ &... @hdwilliams

Bri Luginbill ❤️Compassion Coach for rare disease warriors, empaths and HSPs. ✨rare... @bri.luginbill

Bonnie Parker Super Powers: seeing silver linings and tender mercies in adversity; a... @motherunleashed

Ilana Jacqueline 🍎 PATIENTS: Follow for tips on being cast in media & awareness campaig... @ilana_j

Bina Shah Entrepreneur. Investor. Vision of healing rare neurological disorders... @binashah

Sanath Kumar Ramesh @sanathkr

Christopher Velona Consultant CSG Consulting Special needs parent ♿️ Director at Project... @chrisvelona

Annie Chiang Making sense of biological and clinical data. 👋Here to learn and con... @loquat

Tara Jade Fox Actor | Voiceover Artist | MOCAP LA • Denver • ATL www.tarajadefox.co... @tarajadefox

Taylor Nichols ♿️ Spinal Cord Injury Warrior ‼️On a mission to raise awareness for... @taylormade353

Meg Krench Biotech VC - Corporate Venture @ Sanofi Ventures Seed, Series A, Serie... @mkrench

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

Denise Husak Meraki Photographic Creations...... 🇨🇦 Newborn & Family Photographer... @husakd

MrsRayvenDGAF Respect is love 💗 so 🚫 get disrespectful… ☮️🔆 can be 😈🕯 real quick 🤨😎🤫... @mrsrayven

Sam Blackman Founder and Chief Medical Officer of Day One Biopharmaceuticals. Pedia... @samblackman

Andra Stratton @livinlavidalopo

Manisha Rayavarapu Physician. Lupus Warrior and Advocate. Author. 👩🏽‍⚕️🦋✍️📚 www.thepatie... @mrayavarapu

Lindsey Summers Sr Talent Acquisition Partner at Day One Biopharmaceuticals 🎗💛 They’r... @biopharmasleuth