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 + Follow Instagram Followers 1.2M Follower Growth (2mo) +5% Type Mega Gender Female Get Email Contact Request 295 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 with an extra chromeyFree cap 👇🏼 Partnerships 📧 *****@outlook.com Instagram Handle @claytons_world_ + Follow Instagram Followers 1M Follower Growth (2mo) +1% Type Mega Gender Male 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 + Follow Instagram Followers 621K Follower Growth (2mo) +10% Type Macro Gender Female Get Email Contact

4. Chef Adam Libby

Bio ✉️collabs: *****@gmail.com Instagram Handle @chefadamlibby + Follow Instagram Followers 599.1K 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 + Follow Instagram Followers 589.3K Follower Growth (2mo) -2% Type Macro Gender Male Get Email Contact

6. Brother Boys

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

7. Leighton Clarke

Bio @liv.clarke___ 💍4M + TikTokFor all business: *****@andonovagency.co.nzI sometimes play golf: @wilsongolf @averagetradiegolfers Instagram Handle @uncletics + Follow Instagram Followers 471.9K Type Macro Gender Male 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 + Follow Instagram Followers 465.2K Type Macro Gender Female Get Email Contact

9. Chloe Hayden

Bio If Fawn the fairy was autistic🌸🦈🐴🧚‍♂️🌊 *****@gmail.com Instagram Handle @chloeshayden + Follow Instagram Followers 424.8K Follower Growth (2mo) +12% Type Macro Gender Female 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 + Follow Instagram Followers 395.5K Type Macro Gender Female Get Email Contact

11. 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 + Follow Instagram Followers 339K Follower Growth (2mo) +22% Type Macro Gender Female Get Email Contact

12. 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_ + Follow Instagram Followers 322.4K Follower Growth (2mo) -2% Type Macro Gender Female Get Email Contact

13. Abigail

Bio actor, athlete, advocate Get 321Playsy #educationalgames at the link below #noexcuses #downsyndrome #inclusionmatters #riseup *****@gmail.com Instagram Handle @abigail_the_advocate + Follow Instagram Followers 267.8K Follower Growth (2mo) -1% Type Macro Gender Female Get Email Contact

14. Madison Sponsler

Bio not your average family welcome to the crew 💛 *****@emctalent.com Instagram Handle @thesponslercrew + Follow Instagram Followers 244.4K Follower Growth (2mo) +47% Type Macro Gender Female Get Email Contact

15. Andrew Garland

Bio Business inquiries contact *****@viralnationtalent.com 🔥🤘😎🤘🔥 Instagram Handle @down.rightdelicious + Follow Instagram Followers 238.2K Type Macro Gender Male Get Email Contact

16. Jack Francis

Bio Real life with Tourette’s.Honesty, humour & awareness. 📩 *****@gmail.com Instagram Handle @jackfrancis + Follow Instagram Followers 177.6K Follower Growth (2mo) -1% Type Macro Gender Male 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 + Follow Instagram Followers 150.7K Type Macro Gender Female Get Email Contact

18. Jennifer Hogan Jones

Bio Blessed with a little extra 💛🩵Psalm 139:13-16 Instagram Handle @my.beautiful.ds.journey + Follow Instagram Followers 148K Follower Growth (2mo) -1% Type Macro Gender Female Get Email Contact

19. Tilly Rose

Bio 🩺 On my Insta I write chapters on #patientlife 📚 Author of BE PATIENT 🏆Internationally award winning advocate 🦓 hEDS🌼 @thatpatientcollective Instagram Handle @thattillyrose + Follow Instagram Followers 117.4K Follower Growth (2mo) +2% Type Macro Gender Female Get Email Contact

20. Misty Coy Snyder

Bio 💛💙DS AdvocatePreorder my book now!☀️Creator of @happinessisdownsyndrome Email: *****@naturallyinfluenced.comCreative Director @rodsheroes Instagram Handle @mistycoysnyder + Follow Instagram Followers 102.2K Follower Growth (2mo) +3% Type Macro Gender Female Get Email Contact

21. Jordan Nichole Wall

Bio 💃SAG Actor w/Down Syndrome😜Having fun!🤗🥰🤾‍♀️@sosocal Global Messenger 💙💛@dsa_losangeles21 Board Member🎬 @ariseartistsagency *****@gmail.com Instagram Handle @jordannicholewall + Follow Instagram Followers 101.2K Follower Growth (2mo) -2% Type Macro Gender Female 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 + Follow Instagram Followers 87.6K Follower Growth (2mo) -1% Type Micro Gender Female 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 + Follow Instagram Followers 65.1K 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 + Follow Instagram Followers 36.3K Follower Growth (2mo) +1% Type Micro Gender Female Get Email Contact

25. Annie Segarra

Bio ✍️ Writer, Digital Creative, Advocate🗣 Accessibility, Media Representation, Mental Health, Social Equity ♿️ ♾ 🏳️‍🌈 🇵🇪 🧿📍FL *****@gmail.com Instagram Handle @annieelainey + Follow Instagram Followers 32K Follower Growth (2mo) -1% Type Micro 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 + Follow Instagram Followers 29.7K Follower Growth (2mo) +8% Type Micro Gender Female Get Email Contact

27. Kai

Bio 📚 awareness • books • life 🎻🎨 disabled • ASD & co 🧩🇨🇦 links below ⬇️ Instagram Handle @asexual_amanita + Follow Instagram Followers 15K Type Micro Gender Male 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 + Follow Instagram Followers 10.3K Type Micro Gender Female 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 + Follow Instagram Followers 8.5K Type Nano Gender Male Get Email Contact

30. Luke Manton

Bio Founder of @mantonexecutives 💅Proud dad & living with TourettesHelping others work smarter, not harder ✨ Instagram Handle @lukemanton92 + Follow Instagram Followers 4.3K Follower Growth (2mo) +6% Type Nano Gender Male Get Email Contact

31. 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 + Follow Instagram Followers 4.3K Follower Growth (2mo) +1% Type Nano Gender Female Get Email Contact

32. Millie Bridger

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

33. Mackenzie Abramson

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

34. 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 + Follow Instagram Followers 496.2K Type Macro Gender Male Get Email Contact

35. Kyle Landi

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

36. SaraEve Fermin

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

37. Lexi

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

38. 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 + Follow Instagram Followers 3.6K Follower Growth (2mo) -1% Type Nano Gender Female Get Email Contact

39. Tami Luchow

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