DISORDER: The Rare Disease Film Festival @DisorderRare
Two rare disease dads took their films for Menkes Disease and USP7 & built them into a festival for all films on rare disease. https://t.co/Qjsl21HRH4 thedisorderchannel.com NY and ME Joined March 2020-
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Daniel on Menkes disease and the need to adjust expectations as a parent and facing the reality that Lucas' life would be short. #menkesdisease #cu29 #raredisease ononeconditionpodcast.com/episodes/episo…
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Check out the latest issue of @RareRevolutionM and find our #rarediseasefilm review of @MichaelKeaton Knox Goes Away #cjd #cruetzfeldtjakobdisease #raredisease #rarediseasetruth #careaboutrare What Hollywood film that addresses a rare disease should we review next?
So pleased to announce this new book is coming out in November, and there's a chapter in it written by me. Proceeds will benefit @globalgenes @apexsocialfamilies @bedohavemovement @hd_reach @lemonadpressbooks #PositivelyRareBook #RareDiseaseAwareness #rarediseasebooklaunch
The number one question we get from #raredisease advocates at #thedisorderchannel is How can I make a documentary about my rare disease? So we offer with @globalgenes the #rarelytoldstoriesworkshops and guidebook. #patientstories #patientvoice #careaboutrare #rarediseasetruth
DISORDER: The Rare Disease Film Festival retweeted
A @NASEM_Health committee is seeking input from anyone impacted by, or interested in, U.S. #NewbornScreening to inform a study on strengthening and modernizing these essential programs. Learn more and sign up for email updates: ow.ly/aqVq50QMgmx #Bioethics #HealthEquity
DISORDER: The Rare Disease Film Festival retweeted
A wonderful friend of Inspired Teaching & a wonderful organization. Don't miss out on this opportunity!
Join Daniel "In the Room" tonight 8pm EST with #Courageousparentsnetwork #specialneedsparents #caregivers #worklifebalance #menkesdisease courageousparentsnetwork.org/events/do-you-…
If you're in Philly for @InformaConnect #AccessUSA #rarediseaseSummit be sure to catch a screening of two of our films #blau #lynchsyndrome #raredisease
Who is joining me (Daniel) here?
Join us in this exciting chance to connect with fellow #NewYork advocates, meet with state legislators, and help advance the policy priorities of the rare disease community. To be considered for a travel reimbursement, register by March 19. Join us: bit.ly/36eRp8U
DISORDER: The Rare Disease Film Festival retweeted
Join us in this exciting chance to connect with fellow #NewYork advocates, meet with state legislators, and help advance the policy priorities of the rare disease community. To be considered for a travel reimbursement, register by March 19. Join us: bit.ly/36eRp8U
@GlobalGenes I always love Gary David's insights into this life.
DISORDER: The Rare Disease Film Festival retweeted
Amazing news! Disabled Artist Showcase: Creating Our Spaces was just selected by International Gold Awards @dasoultoucha @tonihickman @genentech @DisorderRare #rarediseases #smacommunity #sma #disabled #disabilities #cerebralpalsy #strokesurvivor
@KristinSmedley WTG!
DISORDER: The Rare Disease Film Festival retweeted
We are pleased to announce the release of NEXT Report 2024: Rewriting the Rules. Download now to see how next-generation patient advocates have been instrumental in driving research, drug development & more: go.globalgenes.org/NEXT-2024 #NEXTReport #GlobalGenes #NEXTReport2024
@NeenaNizar @AftrTheShock @OnceUponAGene @prk2 @JMGraglia @lukebrosen @cdhwings Thanks my friend. Finding others that travel the same path is such a help.
I'm thankful to Mix Talent for including me and Lucas and #MenkesDisease in this #raredisease awareness campaign for #rarediseaseDay2024 . mix-talent.com/rare-disease-d…
Have you wanted to tell the story of your life with a #raredisease as a documentary or a short video? @GlobalGenes has partnered with The Disorder Channel to present workshop trainings to get you ready to make your story into a short film. globalgenes.org/rarely-told-st…
DISORDER: The Rare Disease Film Festival retweeted
It is Menkes Disease awareness, a rare disease caused by mutations in the ATP7A gene in the body. A film by @DisorderRare highlights families discussing life after diagnosis day, including a family with a Menkes Disease diagnosis. To watch: youtube.com/watch?v=sAd1Oe… #MenkesDisease
This article gets into why I work at Global Genes, grieving a diagnosis, grieving the loss of Lucas, how The Disorder Channel was founded and more. Volume 8 page 22 #raritylife Thank you Ceridwen Hughes @SBDRareProject #menkesdisease samebutdifferentcic.org.uk/raritylife
Effie Parks @OnceUponAGene
7K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Luke Rosen @lukebrosen
2K Followers 423 Following Founder of https://t.co/GkrwXhfkoy and https://t.co/eWtcezWeJc. Firefighter. Works with families affected by neurological diseases and cancer. Baseball and hockey. Proud dad.
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Tracy Dixon-Salazar @TracyDixonSalaz
3K Followers 918 Following Neuroscientist who found the drug that gave her daughter years. Now writing the book nobody gave her. CEO @lgsfoundation
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
Abby Turnwald (she/he... @PedsGCAbby
984 Followers 994 Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
CACNA1A Foundation @cacna1a
2K Followers 2K Following Nonprofit dedicated to a brighter future for those with CACNA1A variants. On a mission to fund life changing research while supporting families along the way.
Mike Graglia 🌻 @JMGraglia
7K Followers 2K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Peter Halliburton @phalliburton
2K Followers 2K Following Raising $ for SYNGAP1 🧬 gene therapy // @cureSYNGAP1 501(c)(3) Board // Carter & P’s Dad // @cyberark Channel Sales // Building a small compound in TX 🇨🇱
Becky Sansbury @AftrTheShock
3K Followers 2K Following Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Adam Johnson - DadVoc... @RareDiseaseDad
1K Followers 971 Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Sarita Edwards @SaritaEdwards
1K Followers 788 Following Rare Mom (#Trisomy 18) | Doctoral candidate | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth
Marni Cartelli @Purrfectly_Rare
3K Followers 2K Following Rare Disease Patient, mom, & advocate. Danny's Dose Alliance Board Member. Know who you are & live a way you can be proud of.
n-Lorem Foundation @n_lorem
1K Followers 558 Following Non-profit discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Laura Palmer @LauraPalmer712
607 Followers 752 Following Language Arts teacher, parent of 3, lover of reading and running, epilepsy and rare disease mom.
Bain Brain Lab @BainBrainLab
634 Followers 640 Following 🔬 Neurogenetics at Columbia | HNRNPH2 & brain development research | Dr. Bain | https://t.co/gC8EAdEbTX
Angioedema News @AngioedemaNews
53 Followers 185 Following We are dedicated to sharing the latest news, research, and angioedema patient perspectives.
Hunter @Hunter140033
66 Followers 872 Following
Angela Lindsey @lindsey_an43607
4 Followers 163 Following
KMT2C Foundation @KMT2C
7 Followers 8 Following Patient Advocacy Group championing research for KMT2C chromosomal abnormalities. EIN 33-3590325. #KMT2C #KMT2CFoundation #KMTGeneFamilyFoundation
MI Rare Coalition @MIrarecoalition
19 Followers 114 Following Dedicated to improving the quality of life for all Michigan residents affected by a rare condition through advocacy, education, and awareness.
darkmodebiohacking @darkmodebio
100 Followers 263 Following Biohacker out of Austin, TX. All memes are homemade and CC0. Not all my posts are serious. I’m very friendly, say hi.👋 YouTube: DarkModeBiohacking
Vasudha Mishra | MBBS @mish_amygdala
55 Followers 547 Following BabyDoc | Aspiring Physician-Scientist | she/her | #MedTwitter #MedX #HealthComm #SciComm #HealthTech #GraphicMedicine #FOAMed #NarrativeMedicine #artthatheals
ام ابراهيم @FKI9zK9vP0LkyRt
0 Followers 10 Following
ADEE - Acondroplasia @adee_esp
655 Followers 943 Following ADEE es la Asociación de Personas con Acondroplasia y otras Displasias Esqueléticas en España. Apoyo, visibilidad y defensa de derechos.
Kyrsten Lawless @KyrstenLawless
17 Followers 241 Following Mom, Educator, Rare Disease Advocate (Alpha-Mannosidosis)
Athena House @RetoreshairfZ5
2 Followers 65 Following
Constance Moore @Slesirsh9Sfhhx
0 Followers 137 Following Love is not only a sentiment but also an art.
YoungGiftedBlack @deaidras
278 Followers 2K Following conscious Catholic • global health geek • trauma survivor • rural millennial • @Georgetown • @columbiajourn • @LSHTM • opinions fantastic & my own
Adrien Agoston @adrien_ago88978
197 Followers 3K Following I am a sincere person, faithful, loving, caring, reliable, respectful, sociable, I hate lies and infidelity
Hugh Hempel @HughHempel
373 Followers 461 Following Proud Dad to twins Addi and Cassi - https://t.co/Uoryz3v6px. Passionate healthcare advocate. Executive Director @ N=1 Collaborative.
Julie Strasser @juliestrasser58
433 Followers 5K Following
necrotic gunt @GoatEye8
13 Followers 58 Following
Amy @holdmycape
30 Followers 385 Following Momma to five superheroes. We smash, we Assemble, and we form leagues and we are Groot. We believe everyone has a story and one person can make change
Emily @Smagrorsm2TY4
45 Followers 3K Following
March Circle @march_community
236 Followers 2K Following Privacy-first AI for 400M rare-disease warriors. Stories, research, tools—march with us. 💙 #RareDisease
Fareflesee @FarefleseeKe6E
14 Followers 2K Following
REOLUT - Rare Disease... @REOLUT
31 Followers 340 Following Official Rare Disease UK REOLUT account. Improving lives of people with rare conditions of the lower urinary tract.
ELSI - Rare Disease R... @RDRUK_ELSI
23 Followers 311 Following Official Rare Disease UK ELSI account. Improving the lives of people with rare conditions via ethical, legal and social considerations.
EpiGenRare - Rare Dis... @EpiGenRare
59 Followers 367 Following Official Rare Disease UK EpiGenRare account. Improving the lives of people with epigenetic rare conditions.
Moyamoya Foundation @moyamoyafdn
345 Followers 324 Following 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
51 Followers 263 Following I make and manage awesome websites for #raredisease advocacy organizations. Husband, father, rare disease patient/researcher, web designer 🤓
Siempre Luchando Cont... @SLC6A1_SPAIN
137 Followers 1K Following Ass. de familias con hij@s con #EnfermedadRara (1/38.000): “#EncefalopatíaEpiléptica y del Desarrollo por la mutación del gen #SLC6A1”
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
VanJotthery @vanjotthery
357 Followers 1K Following Researcher of Emerging/Neglected Disease in the U.S., OneHealth Initiative, #RightToKnow Educator, Founder @ USND, Solo Mom, Friend for Life *my views/our laws*
Olivier SIBOMANA @OlivierCurie
1K Followers 2K Following Founder | Published researcher| #digital and #smart health enthusiast #AI #ML #DL #healthtechnology
Priti S Atmakuru @priti_atmakuru
259 Followers 767 Following PhD | rookie centrosome biologist, loyal to cilia & satellites | stem cell biologist | @csir-ccmb | artist | rare ally
SHANTANU SENGUPTA @SHANTAN03364656
51 Followers 4K Following
The Chandler Project ... @thechandlerproj
77 Followers 187 Following Providing advocacy 📣 awareness 💡 research 🔬 & support 💜 for #achondroplasia, #hypochondroplasia, and other skeletal dysplasias 🧬
Philip Palermo @Philip_Palermo
2K Followers 1K Following Father of a child w/ CLN1 (Batten Disease). Formerly: Video Production for @getfandom @tvguide @gamespot. (He / Him)
Shanon Bramblette @Shanon0920
717 Followers 7K Following ?She/Her Bisexual & Bi-romantic TBI, DV, & GSW survivor in recovery. Single mom of 3 kids & 2 fur babies. Spoonie ♿️☮️☯️♋️ BLM Keto Low-carb Pro-Love Pro-Equal
Vicky Arteaga @VickyAArteaga
4K Followers 4K Following Directora para America Latina Fondo Syngap / Co-founder SHER (Sociedad Hispana Enfermedades Raras) / @cureSYNGAP1 Board #SYNGAP1 #RareDiseases
Congenital Hyperinsul... @CHIA_India
18 Followers 114 Following
Marlene Soto @Helpingswans
11 Followers 70 Following Helping Swans Co. a nonprofit that is giving books&giving back. Providing parent workshops, storytelling on disability inclusion
Laboratório de Erros... @inbornerrors
67 Followers 281 Following Laboratory dedicated to the research on inborn errors of metabolism at Universidade Federal do Rio de Janeiro. 👨🔬Gustavo Ferreira 👩🔬 Patricia F. Schuck
Gary Burke @GaryBur49458962
32 Followers 396 Following
CASK Research UK @CASKResearch
150 Followers 324 Following We are a charitable foundation promoting research into CASK gene mutations and associated neurological conditions in hope of finding therapies and treatments
Agnès De Leersnyder @A_deleersnyder
339 Followers 774 Following CEO @Future4care Rejoignez-nous pour développer des solutions de #esanté concrètes et bâtir ensemble la santé digitale de demain. #Future4Care #startup #ehealth
Jon @JonU235
948 Followers 2K Following
Twinkle VanFleet @rsdcrpsfire
2K Followers 4K Following Founder-#StrongerThanPain #StrongerThanCRPS #Advocate #KurtisOzra #ChronicIllness #chronicpain #raredisease #suicidesurvivor #kratomsupporter
Fernando G Vieira @FGVoneforty
541 Followers 834 Following Dad. CEO & CSO at ALS TDI. Talk less, work more. Opinions expressed on this account are my own.
BarabanLab @BarabanLab
3K Followers 3K Following Translational epilepsy research in an academic setting | neuroscience, drug discovery, zebrafish, electrophysiology, cell therapy, precision medicine and more
APBD Research Foundat... @APBDRF
315 Followers 561 Following Supporting individuals and families affected by Adult Polyglucosan Body Disease (APBD), and accelerating improved APBD diagnoses, care and treatment options.
Isaac Molinero @isaac2099
70 Followers 384 Following
Effie Parks @OnceUponAGene
7K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Luke Rosen @lukebrosen
2K Followers 423 Following Founder of https://t.co/GkrwXhfkoy and https://t.co/eWtcezWeJc. Firefighter. Works with families affected by neurological diseases and cancer. Baseball and hockey. Proud dad.
CURE SYNGAP1 aka SynG... @cureSYNGAP1
11K Followers 1K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
Tracy Dixon-Salazar @TracyDixonSalaz
3K Followers 918 Following Neuroscientist who found the drug that gave her daughter years. Now writing the book nobody gave her. CEO @lgsfoundation
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Mike Graglia 🌻 @JMGraglia
7K Followers 2K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Peter Halliburton @phalliburton
2K Followers 2K Following Raising $ for SYNGAP1 🧬 gene therapy // @cureSYNGAP1 501(c)(3) Board // Carter & P’s Dad // @cyberark Channel Sales // Building a small compound in TX 🇨🇱
Marni Cartelli @Purrfectly_Rare
3K Followers 2K Following Rare Disease Patient, mom, & advocate. Danny's Dose Alliance Board Member. Know who you are & live a way you can be proud of.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
KIF1A.ORG @KIF1A
1K Followers 582 Following We connect families affected by KIF1A and relentlessly work to accelerate research. We need to find treatment for this rare neurodegenerative disease. Fast.
Neena Nizar @NeenaNizar
2K Followers 2K Following Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own
David Fajgenbaum, MD @DavidFajgenbaum
14K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing CDCN and Every Cure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF
Charlene Son Rigby @charleneson
385 Followers 289 Following Data Geek. Rare Disease Advocate. Marketer. Mom. Not necessarily in that order. Committed to curing #STXBP1 At @RARE_X_ and @curestxbp1. Opinions are my own.
RDLA @RareAdvocates
6K Followers 2K Following A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
Beyond the Diagnosis @BeyondtheDx
8K Followers 5K Following Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
Erin Moriarty Wade @EMoriartyWade
8K Followers 9K Following Comms Dir at @carrainc - @AtlBizChron and @Columbia alum - mom of child w/#raredisease - #pinksocks - #scleroderma workgroup. Chicagoan in FL. 🌊
CheckRare @CheckRare
3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
Philip Palermo @Philip_Palermo
2K Followers 1K Following Father of a child w/ CLN1 (Batten Disease). Formerly: Video Production for @getfandom @tvguide @gamespot. (He / Him)
Adam Davidson @adamdavidson
119K Followers 3K Following Was: NYT, New Yorker, NPR's Planet Money Now: a bunch of things. Click on the link.
memydadandblau @memydadandblau
47 Followers 340 Following Join Lexi age 6 and her dad (Troy Townsin) as they look for a cure for Blau Syndrome. Learn about the Cure Blau Syndrome Foundation at https://t.co/N9nJ4lqNQS
Cure Blau Sydrome Fou... @BlauFoundation
31 Followers 11 Following The Foundation is committed to the advancement of a cure and progressive treatment practices for Blau Syndrome. Follow us on Instagram! @cureblausyndrome
Wes Fairfield @wfairfld
8 Followers 88 Following
Caitlin Nichols, PhD @caitlinanichols
794 Followers 1K Following Science Program Manager @ 23andMe Lung Cancer Genetics Study | @Harvard Biomedical Sciences PhD | #lungcancer #scicomm #raredisease | Views my own
Momvocate @Momvocate4Lyfe
153 Followers 351 Following Helping parents of kids with rare, complex, or other conditions get the best care. Tips, tricks, & camraderie. #Momvocate for a kiddo with a #raredisease 🧬
Stephanie Foo, author... @stephaniefoooo
26K Followers 2K Following C-PTSD survivor, author of NYT Bestseller. Norcal girl. Hypermobile tree friend. Alum: TAL, Snap Judgment. Words: NYT, Vox. Insta: foofoofoo 🇺🇸 🇲🇾
Raising Rare @Raising_Rare
164 Followers 145 Following Raising Rare focuses on two families’ stories as they navigate a largely uncharted path: the search for treatment, help, and strength raising a rare child.
David Ross @mensraredisease
713 Followers 831 Following MRDMH supports men’s mental health for those suffering with a rare disease. #raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
Patient Advocacy Stra... @PatientAdvStrat
926 Followers 2K Following Crafting Engagement Strategies with Life Science Orgs, Patient Adv Groups & other Stakeholders to Advance Health.
Dermetel @dermetel
127 Followers 435 Following #Nonprofit specializing in rare diseases. #Phase1 clinical trials for #TMAU supplement; #free #teledermatology & #youthcamps
Treximo @Treximo1
305 Followers 319 Following Treximo provides best in class, results-based consulting and strategic quality project management services to the life sciences industry.
OSUGCGP22 @OSUGCGP22
105 Followers 157 Following The Ohio State University Genetic Counseling Graduate Program class of 2022 • Views are of our class, not the institution #classof2022
Philip Mayfield @p_mayfield352
1K Followers 4K Following Servant of God,Advocate,DrDeath & I,Survivor podcast,USNVET #IncompleteQuad #KFS #Syringomyelia #CRPS #Dystonia #Dysautonomia https://t.co/QbXKjC7Cw7
Some 1 Like You @Some1LikeYouCO
451 Followers 3K Following Matches humans with health conditions in person in 2020! Internally funded through the BE KIND Project, empowering littles + their communities. L3C
Rare Is Special @Rare_Is_Special
686 Followers 2K Following Empowering your stories, leading to discoveries
RareBatman1 @RareBatman1
357 Followers 309 Following #RareDisease dad, raising awareness for #EctodermalDysplasia, member of law enforcement community. Love traveling with my family & protecting Gotham (Wisconsin)
Benjamin Forred @SanfordBenF
384 Followers 132 Following #Science Enthusiast. #Biomed Researcher and Director of #Genetics & #Genomics and the @SanfordCoRDS #Registry at @sanfordresearch. #RareDisease #research
Marc Yale @MarcYale
810 Followers 1K Following Advocacy & Research Coordinator, International Pemphigus and Pemphigoid Foundation, #RareDisease Patient, Passionate Advocate and Father. #pemphigus, #pemhigoid
Dare To Be Rare @liveararelife
361 Followers 435 Following Dare to be Rare is a 501(c)3 non profit creating a fundraising channel to help rare disease organizations reach beyond their communities https://t.co/22SiwcRL5t
Chasing Life Project @ChasingLifeProj
282 Followers 312 Following This is a project created to inspire others who are battling illnesses,diseases, disabilities to live a life full of adventure and without limitations.
rareLife solutions @rarelifetalks
688 Followers 524 Following building custom communities with integrated knowledge libraries
WeHealth @WeHealthNews
900 Followers 2K Following Putting patients at the forefront of health outreach, advancing scientific advancement and promoting equitable healthcare for all communities ✨
Amy Price @TheRareView
157 Followers 303 Following
Mindy Youngs @MindyYoungs
335 Followers 226 Following Secretary Helping Hands for GAND * Rare Disease Advocate * Vice President Walters Family Foundation * Sr. Manager, Customer Marketing Procore Technologies
Sabina Kineen @sabkin12
497 Followers 907 Following Trying my best to love, help, & respect others in this crazy world. #RareDisease #PatientVoice #FabryDisease #EhlersDanlos #MentalHealth #HealthEquity
CAL RARE @CalRare
513 Followers 125 Following Non-profit dedicated to improving the lives of rare disease patients in California.
PROS Foundation @PROS_Foundation
238 Followers 213 Following
Danny's Dose @dannys_dose
505 Followers 2K Following Campaign to change Emergency Treatment Protocols in every state for over 32 million Americans requiring specialized care. (501C3)
Leah Trotter @metabolic_mama
69 Followers 74 Following 🧬 Pyridoxine Dependent Epilepsy (PDE) = Rare Genetic & Metabolic Disorder. 💜 Epilepsy Awareness + Rare Disease Advocate 🦓 #newbornscreeningsaveslives
One Rare @One_Rare_
248 Followers 96 Following Our mission is to improve the lives and advance the futures of young adults living with rare conditions through education, recreation, and peer support.
Katie Stevens @sixnwstevies
504 Followers 738 Following Rare Advocate • Global Speaker • Yogi • Mountain Hiker • Science Enthusiast • ED of @TeamTelomereInc #teamtelomere
Con Hennessy @ConHennessy
133 Followers 230 Following CEO of OpenApp, specialists in health informatics, focused on health intelligence and patient registries. #ERN #rarediseases #RealWorldData #NaturalHistory
OSUGCGP21 @OSUGCGP21
169 Followers 372 Following OSU Genetic Counseling Class of 2021. Views are of our class and not of the institution.
Ella Balasa @ellabalasa1
623 Followers 1K Following #patientadvocate | speaker | published writer | living with #cysticfibrosis. Antibiotic resistance and patient co-creation in healthcare are my passions
CRMO Foundation @CRMOFoundation
351 Followers 168 Following Supporting CRMO patients by furthering the efforts of life-changing research, increasing access to resources and education and promoting awareness. #RareAsOne
Nicholette T. Sloat @ntsloat
107 Followers 209 Following Cancer #GeneticCounselor🧬/ MA MS CGC / #UniversityofMichigan graduate alum / #DaytonFlyer at heart / Mother of Cats / Views are my own✌️
Christal Delas @ChristalDelas
113 Followers 169 Following Neuroscientist, special needs advocate and mom to two beautifully complex boys, one with Malan Syndrome 🌻 Co-founder of Malan Syndrome Foundation
RAREsies Rule @itbe444me
314 Followers 544 Following Born with Ollier's disease, 50 surgeries strong, supporting families with a RAREsie, like me! Raising funds for Educational Scholarships. VOLUNTEER position. 💪
Gov_Eugenics @GEugenics
440 Followers 175 Following Advocating for humane treat of pain. Never thought the Gov would sacrifice one group of patients to save another. hEDS, Occipital Neuralgia, OA & more.😔
Meikele Lee, Author &... @MeikeleLee
58 Followers 78 Following Tubie Mom ; A 2017 & 2018 Purple Dragonfly Book Award Winning Author of My Belly has Two Buttons and A Very Tubie Christmas
CDKL5 - IFCR @CDKL5_IFCR
1K Followers 605 Following 501(c)(3) dedicated to advocacy, research & cures for #CDKL5 Deficiency Disorder - a Developmental & Epileptic Encephalopathy (DEE). Formerly used @CDKL5_USA
KCNQ2 Cure Alliance @Kcnq2Cure
963 Followers 915 Following Our promise is to educate and to advance research leading to treatments or a cure for patients living with the genetic disorder KCNQ2
PCDH19Alliance @PCDH19Alliance
481 Followers 186 Following Our mission is to improve the lives of children and families who are affected by PCDH19 Epilepsy.You might like
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