Adam Johnson - DadVocate
@rarediseasedad
Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
ID: 1287776448535621632
http://linktr.ee/RareDiseaseDad 27-07-2020 15:46:54
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Carolyn Fulghum
@cdf67
Emilio Gamus
@egamus
𝗠𝗮𝗴𝘂𝗶 ñoña
@magali_ar
•42 •Amo Bs As •Corrupción o Justicia. Luciani•
Yoni - יוני (and Rebecca too)
@primary_immune
Human. Jew. Israeli. הודו לה' כי טוב כי לעולם חסדו Closed on Shabbat
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Renuka Dhinakaran
@renudhinakaran
International Labour Lawyer Patient Advocate for #hEDS #POTS #LongCovid Focusing on marriage, parenting & chronic illness
Sandra Abrevaya
@sabrevaya
Wife to @bsw5020. Mama. Caregiver. CEO @synapticure providing medical care for Alzheimer’s, Parkinson’s and ALS. Co-founder @iamalsorg. EP @noc_film.
Sarita Edwards
@saritaedwards
Rare Mom (#Trisomy 18) | Doctoral candidate | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth
Becky Sansbury
@aftrtheshock
Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
Beacon for Rare Diseases
@rarebeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Stephanie Fischer
@rarepov
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Erin Moriarty Wade
@emoriartywade
Comms Dir at @carrainc - @AtlBizChron and @Columbia alum - mom of child w/#raredisease - #pinksocks @savvy_coop & #scleroderma workgroup. Chicagoan in FL. 🌊
Pro Bono Omics
@probonoomics
A journey to assist with rare disease challenges offering nil cost advice using computational modeling targeting personalized medicine for those in need.
FxFormularies
@liquidhope
World's 1st award-winning #organic #wholefoods #feedingtube formula. Doctor approved, RD recommended! Whole foods for the whole body since 2006♡
Tracy Dixon-Salazar
@tracydixonsalaz
Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
Victor T. Robinson II
@movieguyvictor
My name is Vic i love movies and music I love to meet new people Check out my podcast, MovieGuyVic, on Spotify for Podcasters: podcasters.spotify.com
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Neena Nizar
@neenanizar
Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, thejansensfoundation.org Opinions are my own
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Brian Wallach
@bsw5020
Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Marni Cartelli
@purrfectly_rare
Rare Disease Patient, mom, & advocate. Danny's Dose Alliance Board Member. Know who you are & live a way you can be proud of.
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Abby Turnwald (she/her)
@pedsgcabby
Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.🚀
David Ross
@mensraredisease
MRDMH supports men’s mental health for those suffering with a rare disease. #raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
Qojie
@qojie19033
Araceli
@a_stpeter62
Margou
@margou04890
ZonaDonne
@nyb49864ka0y06n
Jesus Mayer
@mayerjesus50763
Leilani Romaguera-Crooks
@crooksleil16296
Jalhbui
@jalhbui10897
YvetteHabakkuk
@y6j1w65i2f5icy
Brannon Lemke
@brannonlem60890
Francisco Ureta
@franciscoureta4
Hazel T. Weitzman
@hazel_weitzman
Full-time Crypto Trader | High-Conviction, High-Performance No noise. Just strategy, risk control, and consistent results in high-stakes markets.
Talarmo
@talarmo41724
Ectodermal Dysplasia Advocacy
@ed_advocacy
We tell the African story of ectodermal dysplasia, with heart, heritage, and hope. VOLUNTEER FORM: 👇 forms.gle/5ezQv1g3xfkHys…
Alsrerkir
@alsrerkir9825
McTesee
@mcteseedfox
Don't embarrass yourself. Don't let the years go by.
Kelly
@kelly1551061511
Queeri
@queerigkhco9
Glorla
@stairgleaxes
Perfect day, only need to raise your mouth, with a good mood, big step forward. x.com
jon
@celiacjon
Kompous
@kompous195655
Say NO Bullying
@saynobullying_1
Our mission is to engage, educate, advocate, and emPOWER individuals. We provide resources, education, and advocacy.
Derek Coleman
@derekcolem4158
Nadeesha
@nadeesha966884
I am a medical student in university of Colombo.
Emily
@thiotezdeak
Suzanne Wright
@suzannewright70
Security Consultant | Protection Expert | Executive Protection ✈️🌍 | | Equestrian in my dreams | Animal & Travel love |
🌟Paige Starlet🌟
@paigebliss_
Photography and anime lover Looking for someone to vibe with!
Zaza
@sparkizzyy
Building dollhouses and finding my calm
〇ruby
@ruby113907
Mark
@markharcan1
Diagnosed Stiff Persons Syndrome, seeking others with the Desease. Love to write. 🌈We all have a story, share and you help others. #amwriting ❤️
Matt Lopez
@m_lopez_76
Rareatives
@rareatives
Share Your Rare | Amplifying Rare Disease Voices 🎙️ 📖 Sharing stories from the 1 in 10 🧬 New patient-led publication #RareDisease #PatientVoicesMatter
David
@xnjjwc
终身学习💪
Behind the Mystery
@btmcaresforrare
Rare diseases, real stories, powerful impact. Behind the Mystery™ raises awareness & inspires change. Watch on @lifetimetv!
March.ai
@march_circle
Connect with patients, researchers, and healthcare experts in our community, dedicated to advancing the battle against rare diseases.
Withoutaword
@withoutawo23259
Together4Cancer
@t4cancer
Oncology from a patient-first lens. Data that informs and drives action. Best practices amplified. Curation and perspective by Shruti A. Not medical advice.
Monica🇺🇸🇺🇸
@aamonica2
Renewable energy 🚀 fashion design 👗 entrepreneur 👩💼 philanthropist ❤ travel lover ✈🌍 and dog 🐶🚫 porn.
Jess
@umenaitama76818
CherylPound
@mqbp3k627eog83
peterm peterm
@petermpeterm1
Moyamoya Foundation
@moyamoyafdn
A 501(c)(3) organization for people with moyamoya, a rare, progressive cerebrovascular disease. We support research & assist patients with uninsured costs.
Ben Forred
@zebrasites
I make and manage awesome websites for #raredisease advocacy organizations. Husband, father, rare disease patient/researcher, web designer 🤓
Akosua
@amoahgladys7
I deserve happiness. You deserve happiness too. So let`s smile.
Tracey Tracey
@traceytlc333
Mum who fights for her kids. ASD, Leukaemia, MYBPC3, BRCA2 Cardiomyopathy, Epileptic Encephalopathy, ESES, Graves’ disease +. Loves all Animals, especially Dogs