Top 40 Rare Disease Influencers in 2026

1. Nikki Geib

Bio 👧🏼👧🏼👶🏼🐶mama to three girls (Georgi, Millie, Cozi) and a pup named Dude!💙💛sharing our Down Syndrome journey and what we learn along the way🏡Wisconsin *****@gmail.com Instagram Handle @makingmilliestones Instagram Followers 1.2M Follower Growth (2mo) +3% Type Mega Gender Female Enagagement Rate Get Email Contact Request 294 Rare Disease Instagram Influencers with email contacts in a spreadsheet or csv file. Email us at [email protected] Copy emailEmail us

2. Clayton Hobbs

Bio Brotherhood, everyday life and chicken burgah *****@outlook.com Instagram Handle @claytons_world_ Instagram Followers 1M Follower Growth (2mo) +3% Type Mega Gender Male Enagagement Rate Get Email Contact

3. Jeanna DiVietro

Bio Uber driver with Tourette Syndrome spreading awareness thru humor. Follow me on YouTube, FB, and TikTok for more! *****@gmail.com Instagram Handle @ticstripstruths Instagram Followers 621K Follower Growth (2mo) +10% Type Macro Gender Female Enagagement Rate Get Email Contact

4. Chef Adam Libby

Bio ✉️collabs: *****@gmail.com Instagram Handle @chefadamlibby Instagram Followers 598K Follower Growth (2mo) +2% Type Macro Gender Male Get Email Contact

5. Mike Infante

Bio •living life with cerebral palsy ♿️💪🏻•SAG - AFTRA actor \ disability advocateNick in Freaky Tales out now on @hbomax @primevideo @appletv *****@gmail.com Instagram Handle @mikeyyinfante Instagram Followers 589.3K Follower Growth (2mo) -2% Type Macro Gender Male Enagagement Rate Get Email Contact

6. Brother Boys

Bio | Down Syndrome 💛💙| Barkindji [-0-]your brothers📧 *****@jrmgroup.co Instagram Handle @the_brotherboys Instagram Followers 579.3K Follower Growth (2mo) +2% Type Macro Gender Male Enagagement Rate Get Email Contact

7. Leighton Clarke

Bio @liv.clarke___ 💍4M + TikTokFor all business: *****@andonovagency.co.nzI sometimes play golf: @wilsongolf @averagetradiegolfers Instagram Handle @uncletics Instagram Followers 471.9K Type Macro Gender Male Enagagement Rate Get Email Contact

8. Jessica Kellgren Fozard

Bio 🤘 Deaf & Disabled Activist🌈 Half of @jessieandclaud ❤️ Disability Advocate👶 Honest Parenting👗 Vintage Lifestyle📧 *****@theflockagency.co.uk Instagram Handle @jessicaoutofthecloset Instagram Followers 465.2K Type Macro Gender Female Enagagement Rate youtube.com/@jessicaoutofthe.. + Follow Get Email Contact

9. Chloe Hayden

Bio If Fawn the fairy was autistic🌸🦈🐴🧚‍♂️🌊 *****@gmail.com Instagram Handle @chloeshayden Instagram Followers 424.8K Follower Growth (2mo) +12% Type Macro Gender Female Enagagement Rate novafm.com.au/podcast/boldly-me + Follow Get Email Contact

10. Madison Tevlin

Bio I have Down syndrome & it’s the least interesting thing about me 💕Repped by @unitedtalent@twentyoneqs hostPR/Biz inquiries: *****@madisontevlin.com Instagram Handle @madisontevlin Instagram Followers 394.5K Follower Growth (2mo) +2% Type Macro Gender Female Enagagement Rate Get Email Contact

11. Madeline Stuart

Bio World's 1st Supermodel with Down Syndrome & AutismNO.1 game changer FORBES. Walked 8 seasons NYFW PFW LFW. *****@madelinestuartmodel.com Instagram Handle @madelinesmodelling_ Instagram Followers 328.9K Type Macro Gender Female Enagagement Rate Get Email Contact

12. Summer Adamson

Bio Sharing the joy and beauty of Down syndrome and magic of inclusion ✨A glimpse into the life of our sweet Jayne💕 Buy Now👏 “A Little Extra Jayne”☺️👇 *****@gmail.com Instagram Handle @a_little_extra_jayne Instagram Followers 319.7K Follower Growth (2mo) +18% Type Macro Gender Female Enagagement Rate Get Email Contact

13. Abigail

Bio actor, athlete, advocateRISE UP, 19 powerful stories Grab your copy at the link below #noexcuses #downsyndrome #inclusionmatters #newbook #goodreads *****@gmail.com Instagram Handle @abigail_the_advocate Instagram Followers 269.5K Type Macro Gender Female Enagagement Rate Get Email Contact

14. Andrew Garland

Bio Business inquiries contact *****@viralnationtalent.com 🔥🤘😎🤘🔥 Instagram Handle @down.rightdelicious Instagram Followers 238.8K Type Macro Gender Male Enagagement Rate Get Email Contact

15. Madison Sponsler

Bio not your average family welcome to the crew 💛 *****@emctalent.com Instagram Handle @thesponslercrew Instagram Followers 210.3K Follower Growth (2mo) +29% Type Macro Gender Female Enagagement Rate Get Email Contact

16. Jack Francis

Bio 🎥 Tourettes | ADHD | BPD 🧠 Mental health, raw & unfiltered ✨ Let’s laugh, learn & smash stereotypes 📧 - *****@gmail.com Instagram Handle @jackfrancis Instagram Followers 179.5K Follower Growth (2mo) +2% Type Macro Gender Male Enagagement Rate Get Email Contact

17. Jodie Dyer

Bio Mum life, Tourette’s awarenessDark humour, real life, no cushioningIf you get it.. Welcome! 📧 *****@sharptalent.co.uk Instagram Handle @jodiedyerofficial Instagram Followers 150.7K Type Macro Gender Female Enagagement Rate Get Email Contact

18. Jennifer Hogan Jones

Bio Blessed with a little extra 💛🩵Psalm 139:13-16 Instagram Handle @my.beautiful.ds.journey Instagram Followers 148.5K Type Macro Gender Female Enagagement Rate Get Email Contact

19. Tilly Rose

Bio 🩺 On my Insta I write chapters on #patientlife 📚 Author of BE PATIENT 🏆Internationally award winning advocate 🌼 @thatpatientcollective🦓 EDS Instagram Handle @thattillyrose Instagram Followers 115.7K Follower Growth (2mo) +1% Type Macro Gender Female Enagagement Rate Get Email Contact

20. Jordan Nichole Wall

Bio 💃SAG Actor w/Down Syndrome😜Having fun!🤗🥰🤾‍♀️@sosocal Global Messenger 💙💛@dsa_losangeles21 Board Member🎬 @ariseartistsagency *****@gmail.com Instagram Handle @jordannicholewall Instagram Followers 102.2K Follower Growth (2mo) -1% Type Macro Gender Female Enagagement Rate Get Email Contact

21. Misty Coy Snyder

Bio 💛💙DS AdvocatePreorder my book now!☀️Creator of @happinessisdownsyndrome Email: *****@naturallyinfluenced.comCreative Director @rodsheroes Instagram Handle @mistycoysnyder Instagram Followers 99.8K Follower Growth (2mo) +1% Type Micro Gender Female Enagagement Rate Get Email Contact

22. Sofia Sanchez

Bio Ukrainian Actress in 🅷🆄🅽🅶🅴🆁 🅶🅰🅼🅴🆂 💗🄱🄰🅁🄱🄸🄴 with Down Syndrome💙💛 Scholastic Author 📚 TEDx Talker 🎤 🍭Co-Founder @3.2.1_pop 🍦 Instagram Handle @the.sofia.sanchez Instagram Followers 88K Type Micro Gender Female Enagagement Rate Get Email Contact

23. Chef Chrisin Limites

Bio 👨‍🍳Chef, Barista, Model, Motivational Speaker🍽️Food Truck📍Carr 115km 12.2 Rincón PR ⏰Viernes 11am-4:00pm Sábado 11am-6:30pm. *****@gmail.com Instagram Handle @chrisinlimites Instagram Followers 65.2K Type Micro Gender Male Get Email Contact

24. Jessica Cummin

Bio Just another Mad Cripfluencer™️ with Audhd and no bladder xo. 🚫 NO TRAUMA DUMPING 🚫 Instagram Handle @thechroniciconic Instagram Followers 36.3K Follower Growth (2mo) +1% Type Micro Gender Female Enagagement Rate Get Email Contact

25. Annie Segarra

Bio ✍️ Writer, Digital Creative, Advocate🗣 Accessibility, Media Representation, Mental Health, Social Equity ♿️ ♾ 🏳️‍🌈 🇵🇪 🧿📍FL *****@gmail.com Instagram Handle @annieelainey Instagram Followers 32K Follower Growth (2mo) -1% Type Micro Enagagement Rate youtube.com/channel/UCznS.. + Follow Get Email Contact

26. Lara Bloom

Bio CEO @ehlers.danlos Collaborator•Advocacy Leader•Rare & Chronic Expert•Public Speaker & Campaigner•Lived Experience Champion•Queer 🏳️‍🌈 *****@larabloom.com Instagram Handle @lara.bloom Instagram Followers 29.7K Follower Growth (2mo) +8% Type Micro Gender Female Enagagement Rate Get Email Contact

27. Kai

Bio 📚 awareness • books • life 🎻🎨 disabled • ASD & co 🧩🇨🇦 links below ⬇️ Instagram Handle @asexual_amanita Instagram Followers 15K Type Micro Gender Male Enagagement Rate Get Email Contact

28. Cynthia Covert

Bio Chronic illness advocacy, prayer warrior, Disney adult, finding joy beyond pain. #PsoriaticArthritis #Pancreatitis #BotchedHysterectomy #Fibromyalgia *****@thedisableddiva.net Instagram Handle @the_disabled_diva Instagram Followers 10.3K Type Micro Gender Female Enagagement Rate thedisableddivablog.com + Follow Get Email Contact

29. Sam Reall

Bio Providing support & awareness Tourette Syndrome + co-occuring conditionsTiktok: @tourettes_and.thriveMain: @samreall21 *****@gmail.com Instagram Handle @and.thrive Instagram Followers 8.5K Type Nano Gender Male Enagagement Rate Get Email Contact

30. Emma Major

Bio poet, artist; blind wheelchair user, mental health advocate, disability campaigner, refugee welcomer and chronically exhausted she/her LLMCalling.com *****@gmail.com Instagram Handle @emmuk74 Instagram Followers 4.3K Follower Growth (2mo) +1% Type Nano Gender Female Get Email Contact

31. Luke Manton

Bio Founder of @mantonexecutives 💅Proud dad & living with TourettesHelping others work smarter, not harder ✨ Instagram Handle @lukemanton92 Instagram Followers 4.1K Follower Growth (2mo) +4% Type Nano Gender Male Enagagement Rate Get Email Contact

32. Shannon E Gale

Bio Get the #EDSbook and the #easycookbook at www.shannonegale.com !Unlock your hypermobility super powers and heal. *****@shannonegale.com Instagram Handle @hypermobileandhappy Instagram Followers 3.6K Type Nano Gender Female Enagagement Rate Get Email Contact

33. Millie Bridger

Bio ♡ Founder of milliebridger.com Advocate | Speaker | Writer Living life with EDS&Co. Represented by @zebedeetalent Instagram Handle @_milliebridger Instagram Followers 1.9K Type Nano Gender Female Enagagement Rate Get Email Contact

34. Tami Luchow

Bio Changemaker 📣 | Speaker | Writer | Leadership Consultant 🌎 | Accessibility | Belonging ✨| Disability Activist 🙂 Artist 🎨 Instagram Handle @tamiluchow Instagram Followers 1.2K Follower Growth (2mo) -1% Type Nano Gender Female Enagagement Rate Get Email Contact

35. Martin Moxness

Bio 🐧Autistic🧸🐙ADHD🐫🦃Tourette's🦜♿️🌻Hidden Disabilities Sunflower Ambassador for the Nordics🌻🌐 🎬🖌️📸creative interests🎤🎸🎼🌈👬Gay and taken 💍🏳️‍🌈 *****@outlook.com Instagram Handle @a_different_spectrum Instagram Followers 496.2K Type Macro Gender Male Enagagement Rate Get Email Contact

36. Kyle Landi

Bio 🏆 Bodybuilder with Down Syndrome 💪 Certified Personal Trainer♿️ Redefining Ability & Inclusion Through Fitness ✉️ *****@kylelandi.com Instagram Handle @greenrangerkyle Instagram Followers 400.7K Type Macro Gender Male Get Email Contact

37. SaraEve Fermin

Bio Author of @traumacarnival poet&advocateLife with #epilepsy #mentalillness. 🎶:#dmb #dcfc #thenational 🍋🌎 a 🌷 in a cup. *****@gmail.com Instagram Handle @saraeve41 Instagram Followers 21.3K Follower Growth (2mo) -2% Type Micro Gender Female Get Email Contact

38. Lexi

Bio 🦓 autoimmune | long covid | anxiety✨dysautonomia & mast cell dysfunction 🎓 johns hopkins msph nutrition graduate ‘22 *****@gmail.com Instagram Handle @thegeminiadvocate Instagram Followers 11.1K Type Micro Gender Female Enagagement Rate Get Email Contact

39. Mackenzie Abramson

Bio 🦓 #RareDisease #Patient & #Advocate🧬 #ehlersdanlossyndrome ❤️ #potssyndrome 🧠 #myalgicencephalomyelitis 🌏 #adventurer🐶🐶🐱 #furbaby #mama Instagram Handle @the_kenzie_chronicles Instagram Followers 1.5K Follower Growth (2mo) +1% Type Nano Gender Female Enagagement Rate Get Email Contact