Mackenzie Abramson, MPH
@kenz_chronicles
🦓 #RareDisease #Patient & #Advocate
🧬 #ehlersdanlossyndrome
❤️ #potssyndrome
🧠 #myalgicencephalomyelitis
🌏 #adventurer
🐶🐶🐱 #furbaby #mama
ID: 1911894072
27-09-2013 18:31:24
1,1K Tweet
317 Followers
1,1K Following
Gabe Dixon
@gabedixonmusic
Music Man 🌱🌎
RWJF
@rwjf
Together let's build a future where health is no longer a privilege, but a right. Subscribe: rwjf.org/email Follow: rwjf.org/linkedin
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Lynne Kinst
@lynnekinst
Grateful recipient of grace, wife, mom, Exec Director for @hemocouncilofCA, Founder @DuranKinst - topics vary, opinions are mine.
Joe Danneman
@fox19joe
Sports guy at FOX19 Now in Cincinnati. KOBE!
Kimberly Kaye, FMHC, FN
@kimberly_kaye
Relapsed writer. Sings w/ Loose Cattle. Byline includes The Economist, No Depression, LGBTQ Nation, Human F*ckery Podcast. Ehlers-Danlos “expert.” 🌈 🦓
Autoinflammatory All
@aalliance_said
The Autoinflammatory Alliance (formerly NOMID Alliance) is a 501(c)(3) non-profit improving awareness, care & treatment for autoinflammatory diseases.
Linda Stotsky
@emranswers
Mom | #Marketing Strategist | Creative #Storyteller | #PtAdvocate | #startup mentor | #Pharma contributor | Writer | #pinksocks #BeKind #1stgen 🟦 💕🎗
Mike Porath
@mikeporath
Created @themightysite to help empower and connect people facing disabilities & diseases. Formerly @nytimes @nbcnews @abc @aol
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
EveryLife Foundation
@everylifeorg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Anthem Blue Cross and Blue Shield
@anthembcbs
Anthem Blue Cross and Blue Shield, an independent licensee of @BCBSAssociation
Kendra Gottsleben
@kegottsleben
Disability and rare disease advocate. Executive director of @RareByDesign. Author and fashion enthusiast committed to representation and inclusion.
Liz Kennerley #LongCOVID #RareDisease
@lifeaccrdingliz
#chronicillness #patient & Federal Health Policy #Advocate @SimmonsAlumni, @remember_girls Board member @RareDiseaseDiv1 Patient RISE award recipient. My views.
karl the fog
@karlthefog
All that is sunny does not glitter, not all those in the fog are lost.
Renie Moss
@reniemoss
Advocate/encourager to clinicians and research community working to #ENDNF in my children's lifetime.
Grace Vinton
@hiteawithgrace
Healthcare Pulse + Patient Advocate + Big Data Geek + Serial Connector + New Englandah + Own Opinions 👌
Professor Lara Bloom
@larabloom
President & CEO @TheEDSociety•Prof of Practice Patient Engagement & Global Collaboration•Rare & Chronic Disease Advocate•🏳️🌈Gay•She/Her• Views my own
SoniyaFit
@soniyafit
▫️Ultra-Rare Disease Warrior 🧬 Familial Chylomicronaemia Syndrome (affects 1 in 1 million) | Mental Health Advocate▫️Book - COMING SOON ▫️Wife & Mum of 2
Tracy Shudo
@tracyshudo
Hi I am Tracy and I am on a mission to help people who are living with MS and share about food and health.
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.
ML
@71mal
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. 🌊
RDLA
@rareadvocates
A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
medicalmomma
@prk2
Speaker, Rare disease pt/caregiver, CMMRD/mismatch repair EPCAM Gene family. Medically complex family who travel for medical care
A-T Foundation (India)
@ataxiaindia
Org. for Children affected from a Genetic Medical Condition 'Ataxia Telangiectasia' a Fast-progressive Incurable Neuro-degenerative Rare Disease by @Srivastwa68
Douglas County, NV
@countyofdouglas
Douglas County covers an approximate area of 751 square miles with approximately 50,000 residents. It is in proximity to Reno, Carson City, and Lake Tahoe.
Frank R.
@sarcoidosisofli
All opinions are mine only. Sarcoidosis, and Parkinson's. Published author 2 books on Amazon!
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Gail Devers
@imgaildevers
GAIL DEVERS My Life In Story: Stronger, avail on Barnesandnoble.com amazon.com For inquiries contact [email protected]
Neena Nizar
@neenanizar
Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, thejansensfoundation.org Opinions are my own
Jini Jordan
@jinijordan
#Syngap1Mom #EpilepsyWarriorMom #CureSyngap1 Advocate
Allison Wallis ♿
@allylovespono
Disability Columnist, Honolulu Civil Beat clippings.me/allisonwallis Master of Typos, Raiser of Hell linkedin.com/in/allison-wal… ✡ She/Her
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Stephen J. Ubl
@steveubl
Proud to stand with the millions of Americans working to cure diseases. CEO of @PhRMA. Dad, husband & avid fan of @Twins & @Vikings.
Fibro_Ireland
@fibro_ireland
FibroIreland is a patient organisation for people affected by #Fibromyalgia. We provide general information and support to all those affected by the condition
LGMD Awareness Foundation, Inc
@lgmdawareness
A 501(c)(3) advocacy organization dedicated to globally raising awareness of the rare neuromuscular diseases known as Limb-girdle muscular dystrophy (LGMD).
Mary Overfield
@mary_overfield
Mom to an angel 😇 with Lennox-Gastaut Syndrome, secondary to de novo PURA Syndrome & her older sister - long suffering 7️⃣6️⃣ers fan ™️
कुलवीर बैनीवाल
@aderz85
CRPS survivor Drummer, camper, carpenter, outdoors, METAL music is life
dazzle4rare
@dazzle4rare
Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 linktr.ee/dazzle4rare
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
IndoUSrare
@indousrare
IndoUSrare is a non-profit public charity organization based in the US, which addresses the unmet needs of diverse patients with rare diseases globally.
Sherlock Biosciences
@sherlock_bio
A subsidiary of @orasure, enabling the democratization and decentralization of testing to personalize healthcare and make an impact on global health.
maddie
@urdisabilitygal
Ashley S. Evans
@syngap1mom
Investor Francisco Partners Board @payscale @thisisgslate @litmos @SourceScrub @ZoomInfo Alum @OneCarlyle & @MorganStanley Founder @cureSYNGAP1 #SYNGAP1 🧬
Jill Hawkins
@fam177a1mamma
Founder and President, FAM177A1 Research Fund
SYNGAP1 Global Network (SGN)
@syngapnetwork
Global #SYNGAP1 @cureSYNGAP1 🇺🇸🇬🇧🇪🇺 @Syngap1A 🇦🇷 @SyngapAus 🇦🇺 @OSyngap1 🇨🇦🇫🇷 @syngap1Germany 🇩🇪🇦🇹@syngap1italia 🇮🇹 & 🇪🇸🇮🇳🇯🇵🇸🇪🇨🇭
Rachel
@rachel10302016
Rare Genetics. UBA5. EIEE44. Epilepsy. Family Support Specialist. East Toledo Family Center
Adam Johnson - DadVocate
@rarediseasedad
Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
L-CMD Research Foundation
@foundationlcmd
Nonprofit raising $ to urgently research treatments/cure fatal childhood disease LMNA-related congenital muscular dystrophy lcmdresearch.org
RareByDesign
@rarebydesign
Creating awareness of inclusion, representation and living life positively for #PWD and #RareDiseases along with their families. Founded by @kegottsleben.
Mel 👋
@himelissadesign
Designer, researcher, health tech leader, patient advocate. #believepatients #askpatients
AdvocacyEve
@advocacyeve
Driving empowerment of patients and families within the global #RareDisease community through advancing advocacy, awareness, and collaboration.
Christine Young
@christi1wee
StoryMD
@storymdhealth
StoryMD weaves your medical data into a contextualized, all-encompassing story that empowers you to track, understand, and reclaim control of your health.
Rare Disease and Orphan Drugs Journal
@oae_rdodj
Rare Disease and Orphan Drugs Journal(RDODJ) is an international peer-reviewed, open access, online journal.
Chronius Health
@chroniushealth
One place for your health data. One personalized plan to navigate your care journey. One advocate ensuring you get care you deserve.
Abbey Hauser
@owningmystory
Rare Disease Advocate | Classical Ehlers-Danlos Syndrome | Adaptive Sports Enthusiast | Collector of Quotes | Occasional Superhero | she/they
raising_rareness (Lyndsey Walsh)
@raisingrareness
Mum of 3 Raising awareness of rare diseases & conditions #2q24.2 Advocating for my daughter & Rare Community 💗 #AAC MA Archaeology UCC Opinions my own
Scott Freeman, Ph.D.
@drsnfreeman
CEO, FF Biotherapeutics | Cancer Biology PhD | Regulatory Affairs Expert | PTSD Survivor | Rare Diseases/Orphan Drugs | Guitar | Music | Dad
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]
CheckRare
@checkrare
Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
HCU Network America
@hcuamerica
The mission of HCU Network America is to help patients with #Homocystinuria and related disorders manage their disease and to find a cure. #HCUNetworkAmerica
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.
AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.🚀
Revive Therapeutics (CSE: RVV, US: RVVTF) Official
@revive_rvv
Revive is a life sciences company focused on the research and development of therapeutics for infectious diseases and rare disorders.
Simply Kristy
@simplykristyd
Wife. Mother of 3 awesome kids. Founder of Chronically Simple (@cshealthapp). #EDS Warrior. Advocate for patient empowerment. Lover of coffee.
My Fabry Disease
@myfabrydisease
Having Fabry Disease has a huge impact. It's amazing how few people, including medics, know about it, or understand how it affects people. Let’s change that.