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 (3mo) +5% Type Mega Gender Female Get Email Contact Request 297 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 chromey
Free cap 👇🏼 Partnerships 📧 *****@outlook.com Instagram Handle @claytons_world_ Instagram Followers 1M Follower Growth (3mo) +3% Type Mega Gender Male Get Email Contact

3. Mike Infante

Bio •living life with cerebral palsy ♿️💪🏻
•SAG - AFTRA actor \ disability advocate
Nick in Freaky Tales out now on @hbomax @primevideo @appletv *****@gmail.com Instagram Handle @mikeyyinfante Instagram Followers 645.8K Follower Growth (3mo) +8% Type Macro Gender Male Get Email Contact

4. Jeanna DiVietro

Bio Tics. Trips. Truths. 🚕
Rideshare driver w/ Tourette's turning real moments into comedy + advocacy *****@gmail.com Instagram Handle @ticstripstruths Instagram Followers 629.2K Follower Growth (3mo) +11% Type Macro Gender Female Get Email Contact

5. Chef Adam Libby

Bio ✉️collabs: *****@gmail.com Instagram Handle @chefadamlibby Instagram Followers 599.1K Follower Growth (3mo) +2% Type Macro Gender Male Get Email Contact

6. Leighton Clarke

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

7. 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 youtube.com/@jessicaoutofthe.. + Follow Get Email Contact

8. Chloe Hayden

Bio If Fawn the fairy was disabled
🌸🦈🐴🧚‍♂️🌊
@glimmerthreadsau *****@gmail.com Instagram Handle @chloeshayden Instagram Followers 423.1K Follower Growth (3mo) +10% Type Macro Gender Female novafm.com.au/podcast/boldly-me + Follow Get Email Contact

9. Madison Tevlin

Bio I have Down syndrome & it’s the least interesting thing about me 💕
Repped by @unitedtalent
@twentyoneqs host
PR/Biz inquiries: *****@madisontevlin.com Instagram Handle @madisontevlin Instagram Followers 395.5K Follower Growth (3mo) +1% Type Macro Gender Female Get Email Contact

10. 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 339K Follower Growth (3mo) +23% Type Macro Gender Female Get Email Contact

11. Madeline Stuart

Bio World's 1st Supermodel with Down Syndrome & Autism
NO.1 game changer FORBES.
Walked 8 seasons NYFW PFW LFW. *****@madelinestuartmodel.com Instagram Handle @madelinesmodelling_ Instagram Followers 322.4K Follower Growth (3mo) -2% Type Macro Gender Female Get Email Contact

12. Abigail

Bio actor, athlete, advocate
Get 321Playsy #educationalgames at the link below #noexcuses #downsyndrome #inclusionmatters #riseup *****@gmail.com Instagram Handle @abigail_the_advocate Instagram Followers 267.8K Follower Growth (3mo) -1% Type Macro Gender Female Get Email Contact

13. Madison Sponsler

Bio not your average family
welcome to the crew 💛 *****@emctalent.com Instagram Handle @thesponslercrew Instagram Followers 244.4K Follower Growth (3mo) +49% Type Macro Gender Female Get Email Contact

14. Andrew Garland

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

15. Jack Francis

Bio Real life with Tourette’s.
Honesty, humour & awareness.

📩 *****@gmail.com Instagram Handle @jackfrancis Instagram Followers 177.6K Follower Growth (3mo) +1% Type Macro Gender Male Get Email Contact

16. Jodie Dyer

Bio Mum life, Tourette’s awareness
Dark humour, real life, no cushioning
If you get it.. Welcome!
📧 *****@sharptalent.co.uk Instagram Handle @jodiedyerofficial Instagram Followers 151.9K Follower Growth (3mo) +1% Type Macro Gender Female Get Email Contact

17. Jennifer Hogan Jones

Bio Blessed with a little extra 💛🩵
Psalm 139:13-16 Instagram Handle @my.beautiful.ds.journey Instagram Followers 148K Follower Growth (3mo) -1% Type Macro Gender Female Get Email Contact

18. Tilly Rose

Bio 🩺 On my Insta I write chapters on #patientlife
📚 Author of BE PATIENT
🏆Internationally award winning advocate
🦓 hEDS
🌼 @thatpatientcollective Instagram Handle @thattillyrose Instagram Followers 117.4K Follower Growth (3mo) +2% Type Macro Gender Female Get Email Contact

19. Misty Coy Snyder

Bio 💛💙DS Advocate
Preorder my book now!
☀️Creator of @happinessisdownsyndrome
Email: *****@naturallyinfluenced.com
Creative Director @rodsheroes Instagram Handle @mistycoysnyder Instagram Followers 102.2K Follower Growth (3mo) +3% Type Macro Gender Female 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 101.2K Follower Growth (3mo) -2% Type Macro Gender Female Get Email Contact

21. 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 87.6K Follower Growth (3mo) -1% Type Micro Gender Female Get Email Contact

22. 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 65.1K Type Micro Gender Male Get Email Contact

23. Jessica Cummin

Bio Just another Mad Cripfluencer™️ with Audhd and no bladder xo.
🚫 NO TRAUMA DUMPING 🚫 Instagram Handle @thechroniciconic Instagram Followers 36.3K Type Micro Gender Female Get Email Contact

24. 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 (3mo) -1% Type Micro youtube.com/channel/UCznS.. + Follow Get Email Contact

25. 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 Type Micro Gender Female Get Email Contact

26. Kai

Bio 📚 awareness • books • life 🎻
🎨 disabled • ASD & co 🧩
🇨🇦 links below ⬇️ Instagram Handle @asexual_amanita Instagram Followers 15K Follower Growth (3mo) -1% Type Micro Gender Male Get Email Contact

27. Cynthia Covert

Bio #WelcomeToMyChronicLife
The real, raw & ridiculous side of Psoriatic arthritis, endometriosis, surgical damage & undiagnosed abdominal pain. *****@thedisableddiva.net Instagram Handle @the_disabled_diva Instagram Followers 10.1K Follower Growth (3mo) -2% Type Micro Gender Female thedisableddivablog.com + Follow Get Email Contact

28. Luke Manton

Bio Founder of @mantonexecutives 💅
Proud dad & living with Tourettes
Helping others work smarter, not harder ✨ Instagram Handle @lukemanton92 Instagram Followers 4.3K Follower Growth (3mo) +8% Type Nano Gender Male Get Email Contact

29. 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 4.2K Type Nano Gender Female Get Email Contact

30. 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 Get Email Contact

31. Mackenzie Abramson

Bio 🦓 #RareDisease #Patient & #Advocate
🧬 #ehlersdanlossyndrome
❤️ #potssyndrome
🧠 #myalgicencephalomyelitis
🌏 #adventurer
🐶🐶🐱 #furbaby #mama Instagram Handle @the_kenzie_chronicles Instagram Followers 1.5K Follower Growth (3mo) -2% Type Nano Gender Female Get Email Contact

32. Brother Boys

Bio | Down Syndrome 💛💙
| Barkindji [-0-]
your brothers
📧 *****@jrmgroup.co Instagram Handle @the_brotherboys Instagram Followers 579.3K Type Macro Gender Male Get Email Contact

33. 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 Get Email Contact

34. 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

35. SaraEve Fermin

Bio Author of @traumacarnival poet&advocate
Life with #epilepsy #mentalillness. 🎶:#dmb #dcfc #thenational 🍋🌎 a 🌷 in a cup. *****@gmail.com Instagram Handle @saraeve41 Instagram Followers 21.1K Follower Growth (3mo) -3% Type Micro Gender Female Get Email Contact

36. 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 Get Email Contact

37. Sam Reall

Bio Providing support & awareness Tourette Syndrome + co-occuring conditions
Tiktok: @tourettes_and.thrive
Main: @samreall21 *****@gmail.com Instagram Handle @and.thrive Instagram Followers 8.5K Follower Growth (3mo) -1% Type Nano Gender Male 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 Instagram Followers 3.6K Follower Growth (3mo) -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 Instagram Followers 1.2K Follower Growth (3mo) -1% Type Nano Gender Female Get Email Contact