Rare Advocacy Movement @RareAdvocacy
Network of people with #RareDisease #LivedExperiences dedicated to evolving the #LivingRare experience into opportunities for the global community to thrive. RareAdvocacyMovement.com United States Joined January 2018-
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Do you know which rare disorder affects both muscles and skin? Hints! Symptoms include: red or purple rash, calcium deposits under the skin, muscle weakness, and trouble talking or swallowing. Complications may include cancer, lung, GI and heart disease. It may coexist with…
Do you know which ultra-rare neurodevelopmental disorder causes intellectual and mobility issues in children? Hints! Symptoms include delayed learning and cognitive development, muscle weakness and/or underdeveloped muscles, seizures and low body weight. To learn more about…
Rare Disease Day is a day where the global rare disease community joins in the effort to raise awareness for rare diseases and share initiatives that aim to improve the lives of people impacted by a rare disease. On this special year, RAM joined @SMU_SA in recognizing Rare…
Today, February 29, 2024, we recognize International Rare Disease Day (RDD), in partnership with @SMU_SA. This year's RDD is an extraordinary global event because it is a leap year, an occurrence that takes place every 4 years. With over 400 million people impacted by a rare…
Do you know which genetic neuromuscular disorder causes weakness in muscles? Hints! It is a type of glycogen storage diseases which causes progressive weakness in the heart and skeletal muscles and breathing issues, and the diagnosis is confirmed using genetic testing. To learn…
“In the world of rare, every story is an epic tale.” – Sara Williams #valentinesday #dayoflove #rare360 #livingrare #lovingrare #rarelove #rarediseases #raredisease #rareadvocacy #rareactivism #lovestory #spoonies #rarejourney #rarewarrior
“Rare diseases teach us that every heartbeat is a miracle.” – Anonymous #raredisease #rareadvocacy #rare360 #LivingRare #spoonies #spooniewarrior #miracles #rarediseases
Do you know which rare bone growth condition causes disproportionate #dwarfism? Hints! Symptoms include maximum height of 4-ft., #poormuscletone and #loosejoints, back and leg #pain, and frequent #earinfections. To learn more about this #raredisease visit:…
Attention IgG4 RD community! A population-based study suggests that the incidence and prevalence of IgG4-RD significantly increased from 2015 to 2019 in the US. The IgG4-RD community is growing and it’s important to support those affected. If you are diagnosed with IgG4-RD,…
Do you know which multi-systemic rare disease is characterized by swollen lymph nodes and enlarged organs? Hints! Symptoms include swelling in the eyes or vision loss, weight loss, fatigue, pain, skin redness, lumps or rashes, and typically requires a biopsy for diagnosis. To…
Milestone in Gene Therapy: Casgevy Approved for Transfusion-Dependent Beta Thalassemia rare360.life/post/casgevy-a…
The REAL WORLD rare disease community is complete with an array of beautifully diverse people, of varying nationalities, ethnicities, genders, religions, socioeconomic classes, experiences and perspectives. Historically, rare disease patient advocacy groups have struggled to…
As we celebrate the new year, we also recognize that living with a rare disease ("Living Rare") is an every day lived experience. The Living Rare experience does not pause and does not take breaks. Rare disease is every day. Let's toast to 2024! We look forward to continuing our…
As we celebrate the new year, we also recognize that living with a rare disease ("Living Rare") is an every day lived experience. The Living Rare experience does not pause and does not take breaks. Rare disease is every day. Let's toast to 2024! We look forward to continuing our…
Living Rare News - Today, on the last day of the year, we conclude 2023 and gear up for 2024 ... mailchi.mp/15e52796d329/d… #rare360 #rareadvocacy #rareActivism #rarediseases #spoonies #disability #WeareRARE #StayStrong #chronicillness #ChronicPain #chronicfatigue #LivingRare…
The Rare Disease Community is a unique representation of human variation and the beauty that thrives within life’s abundant expressions. The Rare Disease Community encompasses over 400 million people strong on a global scale. This holiday season, reach out to someone impacted…
On this day, we recognize the strength and resilience of the families and loved ones of the global rare disease community. We are thankful for the privilege of belonging to such an amazing global family and will continue to work hard towards establishing an infrastructure where…
PSA: Survivors of medical trauma are frequently invited to speak at conferences. The stories they tell are harrowing and educational for anybody who cares for patients, which is why they are popular participants in plenary sessions and panel discussions. 1/3
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Rare Patient Voice @rarepatientvoic
2K Followers 4K Following We help clients find rare and non-rare disease patients and caregivers for studies, and connect patients and caregivers with paid research opportunities.
Abby Turnwald (she/he.. @PedsGCAbby
927 Followers 1K Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 6K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Adam Johnson - DadVoc.. @RareDiseaseDad
1K Followers 1K Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
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.
Princess, The Tower @APainPrincess
28K Followers 27K Following Chronic Pain Healing Portal for everyone affected by severe #chronicpain & #chronicillness—by a princess with full body #CRPS #Fibromyalgia #PainSupport #CPP
Becky Sansbury @AftrTheShock
2K Followers 2K Following Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
ALS Advocacy @alsadvocacy
12K Followers 2K Following ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous.
Sarita Edwards @SaritaEdwards
1K Followers 814 Following Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
Cara Radics @CaraR77114
37 Followers 5K Following
Librada Ranson @LibradaRans
76 Followers 5K Following
January Payne @januarypayne
1K Followers 2K Following Health communicator. Health equity advocate. Former health/medical journalist @washingtonpost @usnews. Dog mom. 🐶🐩🐕 Opinions are my own.
Khushboo Singhal @KhushbooS_93
14 Followers 149 Following Research scholar working in the field of #RareDisease Phd in #humamgenomics
Kelly Albers @5kids1991
4 Followers 44 Following New Tennesean. Escaped the confines of California liberalism. Wife, teacher, mom and grandma
Alström Syndrome UK @AS_UK
2K Followers 5K Following 'Alström Syndrome is a rare genetic condition affecting every organ in the body. ASUK provides support & guidance for those affected.' Tweets by Catherine Lewis
Owoeye David @davoshalom
775 Followers 2K Following God Lover. Infection Prevention & Control Specialist. Sickle Cell Warrior & Advocate. Author. https://t.co/9z1lvAfJYh…
Curtiss Reid Coleman @CReidColeman
448 Followers 2K Following Social Worker/Social Media Advocate working with Hemophilia, HIV, Hep C and LGBT Rights. Stroke Survivor. I love animals, nature, travel.
Aymi Ai @Aymi929
74 Followers 398 Following
Robert Frank @Robertfrank235
666 Followers 2K Following Success is not final, failure is not fatal: it is the courage to continue. Married to Gaetana Greco Fodera
Focus On Sickle Cell .. @UgandaSickle
255 Followers 1K Following FOSCA exists to provide a multi-faceted approach to combating SCD that includes testing, research, raising awareness, and providing psychosocial support.
FSR @StopSarcoidosis
3K Followers 631 Following The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving care.
Harli Totter @HarliTott
51 Followers 5K Following
RatneshVerma @rattu4u1
66 Followers 59 Following
Sarah W @queenmean
179 Followers 1K Following A great civilization is not conquered from without until it has destroyed itself from within. - Will Durant
Autumn Ryan @AutumnR53821595
142 Followers 875 Following Hayden’s wife, Beau & Charlie’s mom, Autism/PTHS mom, Proud Creek, Boomer Sooner, Blue Heelers rock, Love Conquers All
Arcensus @arcensus
147 Followers 56 Following Arcensus is an innovative start-up healthcare company dedicated to the early medical diagnosis of all genetic diseases and dispositions.
Canadian Association .. @PorphyriaCanada
95 Followers 608 Following Providing information and support to Canadians with porphyria and their families since 2014.
Searcher @Searcher17424
35 Followers 51 Following
fsgpllm9rxls @3pgxsv8zw
6 Followers 220 Following If you want to make friends, you can contact me anytime TG：https://t.co/YCBZ4YSZpH
The Chandler Project .. @thechandlerproj
74 Followers 164 Following Advocating for awareness surrounding R&D for #achondroplasia and other forms of #dwarfism, i.e., #skeletaldysplasia – @ach_research @skeletal_dys
Michelle Mayer @MichelleAMayer
11 Followers 174 Following
Dr. Jennifer Curtin @jencurtinmd
3K Followers 2K Following Physician. Entrepreneur. Nerd. 🍊YCW22. RTHM co-founder. Recovered ME/CFS. Treated infection assoc illness b4 Covid. Tweets/DMs are my own & not medical advice.
Jack Trujillo @JackTru16084055
44 Followers 48 Following
Shanon Bramblette @Shanon0920
712 Followers 5K 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
Patroski Lawson @Patroski
371 Followers 764 Following Husband. Father. Government Affairs & Corporate PAC Pro. Certified Specialist of 🍷Wine. Wine Educator. Foodie. https://t.co/CtJBngZIvo
CarthaGenetics® @carthagenetics
94 Followers 137 Following CarthaGenetics®: Your Orphan Drug Companion!
RareDiseaseDiversityC.. @rarediseasediv1
163 Followers 45 Following
Elle Cole (She/her) @Cleverlychangin
11K Followers 9K Following International best-selling (8X) author Speaker & advocate for #sicklecelldisease Producer & #CleverlyChangingPodcast Host 💌 [email protected]
Linda Molina @LindaMolina_
63 Followers 941 Following I am a #medfrag mom. #payfamilycaregivers #hcbs #carecantwait #nursingshortage #A9034 #S8599
Alyssa Johnson @johnsona_lsu
434 Followers 704 Following Assistant Professor @LSU using worms and flies to study lysosomes, aging, and age-related diseases. PhD, Vanderbilt (@gould_lab). Postdoc, UCSF (Davis lab).
strongerthancrps @strongrthancrps
235 Followers 493 Following Complex Regional Pain Syndrome Info & Support
𝓐𝓶𝓫𝓮𝓻�.. @Amberley_Levine
339 Followers 2K Following 🌌 ᕲᘿᗩᕲ Sᖶᗩᖇ 🌌 Starseed, Indigo Child, E.T., HSP, Empath, Lightworker, Spiritualist, Naturalist
Haystack Project @HaystackProject
207 Followers 268 Following We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
Wendi Smith-Pasa @PasaWendi
423 Followers 684 Following
CASK Research UK @CASKResearch
166 Followers 353 Following We are a charitable foundation promoting research into CASK gene mutations and associated neurological conditions in hope of finding therapies and treatments
Kotiteson @kotiteson96397
75 Followers 2K Following
Tessa Gooding @Tessa_Gooding
2K Followers 5K Following Freelance journalist with a background in social infrastructure strategic planning, research & consultancy.
Glendalee deRuiter @MGMdeRuiter77
26 Followers 63 Following
alyssa_m_cruz @alyssa_m_cruz
1 Followers 16 Following
The Ectodermal Dyspla.. @EDSocietyUK
221 Followers 351 Following Our vision is that every individual and family affected by ED is equipped with the knowledge needed to manage ED effectively and live life to the full.
Cody L. Hanson @DaManCody
204 Followers 2K Following To call me rare would be an understatement -Live Life Inspire Others- Index case for CFZ syndrome-PAH Phighter-Entrepreneur-Philanthropist, opinions are my own
Gurleen Course5 @GCourse563329
0 Followers 10 Following
iGXP Solutions @iGXPSolutions
56 Followers 247 Following
Kerri @KerriH32072
112 Followers 299 Following Mom of 2 amazing kids. I love my family, Boston terriers, independent thinkers, laughing, kindness, people that have patience, who don’t live by Ego
Pat Reubens @PatReubens
24 Followers 83 Following
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Rare Patient Voice @rarepatientvoic
2K Followers 4K Following We help clients find rare and non-rare disease patients and caregivers for studies, and connect patients and caregivers with paid research opportunities.
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Adam Johnson - DadVoc.. @RareDiseaseDad
1K Followers 1K Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Becky Sansbury @AftrTheShock
2K Followers 2K Following Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
ALS Advocacy @alsadvocacy
12K Followers 2K Following ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous.
Sarita Edwards @SaritaEdwards
1K Followers 814 Following Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
Ana Mingorance @CNSdrughunter
3K Followers 1K Following 🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others.
Devin Shuman (she/her.. @DevinShuman
3K Followers 5K Following A genetic counselor with #MitochondrialDisease. @SmithCollege Alum, #mitoGC #disabledGC #GeneChat #AbortionIsHealthcare #RareDisease opinions are my own🏳️🌈
Barby Ingle Official @BarbyIngle
21K Followers 9K Following #AZ State Rep Candidate #LD7 |#PCRC D5, | #IAm #Writer #RareDisease #ChronicPain, #UniversalPetite, Creator of #NERVEmber | husband - @KenRayTaylor
Simons Searchlight @s_searchlight
2K Followers 4K Following Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: https://t.co/kokQ7uLYWd
22Q11 Ireland @22Q11_Ireland
5K Followers 5K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Torie Robinson 🇺�.. @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
AccidentalAdvocate @AccidentalAdvo1
922 Followers 2K Following Mum to a family with #22q11 #VerbalDyspraxia #Autism RADLD ambassador Director Finding Charlie's Voice Learning as we go along. Tweets are my own
Lisa Alcock @Lisa_HumMovSci
2K Followers 4K Following Senior Researcher @BAM_Research @UniofNewcastle || Gait Lead @ Clinical Ageing Research Unit @NIHR_Newc_CRF || #gait #falls #ageing #neurodegeneration
Health Research Chari.. @HRCIreland
4K Followers 2K Following National umbrella org supporting 45+ charities active in health, medical & social care research. Also run the Irish Health Research Forum. Charity No. 20052973
InstitutoVidasRaras @ApmpsVIDA
706 Followers 425 Following Desde 2001 cuidando dos Raros do Brasil. 11 2414 3060 curta: https://t.co/JfkApBlkTO insta: @vidasraras
Payel Bhattacharya (W.. @Payelbha
387 Followers 450 Following life ought to be large not lengthy ~ Neuroendocrine cancer fighter
Life's a Polyp @LifesaPolyp
736 Followers 1K Following Rare Disease Advocate: (FAP) Familial Adenomatous Polyposis, Short Bowel Syndrome. Children’s Book Author
Alyssa M. Twine @Alyssamtwine1
1K Followers 5K Following proud epilepsy warrior, advocating for other people with epilepsy, Austin Peay student, catholic, love to write as a hobby.
Jen Hadfield @Jenny_Hadfield
430 Followers 615 Following I'm a designer (mainly service design in gov) who gets joy from solving problems that make the world better
Senpower Ltd @SenPowerinfo
339 Followers 1K Following SEND advocacy supporting parents and carers of children with special education needs and disabilities nationwide. email [email protected]
Kristin Lashoff @kmlashoff
46 Followers 209 Following CEO/Founder of Stryve Creative Community Leader of United for Rare Mom to 3 Kiddos Wife to @mattlashoff Rare Disease Advocate
Bob ☯️🥁 @Wayofzen
524 Followers 1K Following Invisible Illness Warrior. EDS Type 3. Spoonie. Drummer @dmbtributenj Evolving 🪬Rhythm=LoVE. Yin&Yang Duality. Jam bands. Punk.🤘🏼GenX. 💜🗝️🌸 #dogecoin
Claudia A. Merandi @CMerandi
10K Followers 512 Following RI HCP/patient advocate. Founder Doctor-Patient Forum/Don't Punish Pain.
Justin G @syndrome22q1
30K Followers 13K Following Official Twitter Account for Justin G /online influencer / I love to Raise Awareness for 22q /Appeared on @NewsHourExtra @NewsWeek + More
Melissa Blake @melissablake
114K Followers 5K Following Writer. Blogger. Disability activist. Op-ed queen. Viral tweeter. Sassy redhead. Down-home Carrie Bradshaw. Bylines: CNN, Cosmo, Glamour. 💌 [email protected]
Miracle Flights @miracleflights
3K Followers 977 Following We provide free flights to sick children in need of life-saving medical care not available in their local communities. ✈️
julia ferraioli @juliaferraioli
21K Followers 2K Following AI/ML Open Source Magician Doing #OpenSource-y stuff, probably full of bees. @StoriesOfOSS co-founder. #DiversityIncludesDisability.
Dr K Fearnley @fearnley_k
12K Followers 598 Following NHS Doctor | Animal rights activist | Long Covid Research Initiative | helping to make invisible illness VISIBLE | advocate for #ME | #LongCovid | #CleanAirBill
Skinny Genes Foundati.. @smardiac
535 Followers 4K Following Raising awareness 4 genetic disorders causing aortic dissections. Turning tragedy into purpose after losing my dad to the #genetic disorder I was diagnosed with
Neuroscience News @NeuroscienceNew
451K Followers 6K Following Official Neuroscience News Twitter. Brain research news articles on neuroscience, psychology, AI, neurology, brain cancer, robotics, mental health & science.
Allison Kessler, MD @abkessler
535 Followers 188 Following Section Chief Spinal Cord Injury @Abilitylab, Assistant Professor of PM&R @NUFeinbergMed. SCI Fellowship @NorthwesternPMR. Wheelchair User, mom.Opinions my own.
Diana Cejas, MD, MPH @DianaCejasMD
9K Followers 2K Following child neurologist @UNCCIDD | occasional author | Cancer Survivor | Stroke Survivor | Disabled | she / her / hers | my opinions
Sighted Non-24 and Au.. @Sighted_N24_ND
441 Followers 3K Following #Non24 child, #DSPD parent. Sharing our experiences with #CircadianRhythm #SleepDisorders https://t.co/M83Y6fxyfW board member.
Kirstie Heneghan @kjhen2010
802 Followers 5K Following Passionate about entrepreneurship that benefits lives, and purposeful integrated marketing experiences. Profile pic by AI - it's a better looking version of me!
Aparna Nair @DisabilityStor1
13K Followers 5K Following Actually a historian! Disability and Biomedicine in India History of Public Health; Dogs; Epilepsy. Always Pre-Exhausted. Opinions do not reflect employers'
Rebecca Middleton @RebeccaMiddle16
849 Followers 3K Following Founder & CEO, HBA Support | Vice Chair Participant Panel at Genomics England | Managing Director, Middleton Davies@middlet0ndavies, @hba_support | Views Own
bharathmdfoundation @bharathmdfound1
263 Followers 1K Following A Parent Advocacy Organisation of Muscular Dystrophy. NGO under Sec 8 of MCA 2013. Awareness, Approach , Assistance,Prevention, Management and Cure.
Jess Plant @IAmJessPlant
6K Followers 7K Following (They/She). 5w4, Autistic & Neurodivergent, Carer, ✝️, ♿, Fat, INFP, 🏳️🌈, Left-liberal progressive socialist, Mentally ill.
Rahema @Rahema_UCL
615 Followers 999 Following The Neurogenetics Lab at UCL Queen Square Institute of Neurology @UCLIoN. Interested in Neurogenetics, Rare Diseases, Science Communication & Innovation
Pam Cusick @PamCusick4
37 Followers 160 Following Helping patients and caregivers connect with researchers around the world.
CADForg @CadForg
116 Followers 232 Following Cold Agglutinin Disease Foundation Inc, CAD Foundation was created in 2019 as a non-profit, (501)(c)(3) corporation. It is dedicated to the advancement of CAD
Heather Hayes @hhayes91
1K Followers 5K Following 💙 BC Survivor, Friend, Lake & Dog Lover, #meshinjured Diagnosed w/#MECFS, MCAS, Fibro, CRPS, PA, Hashimoto’s & Autoimmune CIRS from J&J Prolene mesh.
Asociación DDX3X Esp.. @DDX3X_ES
178 Followers 325 Following 🧬Asociacion creada por familias cuy@s hij@s presentan una mutación en el gen DDX3X. Entidad registrada en el Registro Nacional de Asociaciones en mayo de 2022.
Tahmina Ali @Tahmina_UCL
5 Followers 22 Following Clinical Neuroscience MSc student at UCL Queen Square Institute of Neurology
Greta MacMillan @GretaMacmillan
34 Followers 90 Following LCSW/therapist specializing in chronic health and religious trauma. Chronic illness warrior, csf leak, pots, mcas, hEDS, sfn. Forager and nature enthusiast.
Tracy Lau @TracyLau_
38 Followers 156 Following PhD student at UCL Queen Square Institute of Neurology | @UCLIoN | 🧬🥼🔬
Faith Boyle @faithyb73
2K Followers 5K Following Living with Genetic Condition Marfan Syndrome. Passionate about awareness. #disability #mentalhealth #ally🌈 #invisibleillness #Rare #community #inclusion
Madison Bowe @MadLoveInsp
231 Followers 520 Following 28 year old variety streamer living with a Rare Disease called Stiff Person Syndrome. Mirage Main on Apex Legends https://t.co/Upp5zlArka…
IASCNAPA @iascnapa
147 Followers 260 Following International Association of Sickle Cell Nurses and Professional Associates
Megan Slattery @RareDiseaseMAE
373 Followers 559 Following Rare Disease (#MAE) #Epilepsy Mom-vocate. Former IT Consultant. Health & Wellness Enthusiast.
Nathalie Vernan @NathalieVernan
13 Followers 114 Following An American in Belgium trying to raise awareness for Chiari Malformation, rare diseases and support a friend and her child
Ramona B @RamonaB17278157
20 Followers 224 Following Diagnosed with reactive AA Amyloidosis and neutropenia (SDS syndrome). Convivo con una rara immunodeficienza chiamata neutropenia e con l'amiloidosi AA.
Angela @AngelaHecyk
186 Followers 1K Following Biotech clinical operations. Ewing’s sarcoma survivor & patient advocate. Sconnie and wildlife ecologist at heart.
Doctor Cherylea Brown.. @Cherylea_Browne
100 Followers 142 Following Anatomist | Neuroscientist | NSW Australian Brain Bee Challenge Coordinator | Senior Lecturer in Human Anatomy @westernsydneyu
Chris White @MucosalMelanoma
300 Followers 1K Following Mucosal Melanoma Survivor, LLC. Rare Cancer Thriver, and Advocate. Self-Published Author, Inspirational Speaker, and JuicePlus+ Affiliate
The Children’s Rare.. @thecrdfund
34 Followers 146 Following Dedicated to curing rare genetic disorders
Megan Nolan @meganmnolan
434 Followers 49 Following Founder, Rare Parenting; Co-Founder, The Children's Rare Disorders Fund
Care & Respond @CareAndRespond
116 Followers 583 Following Create a health passport and engage friends & family support when most needed. Developed in partnership with the NHS.
FahrBeyond @FahrBeyond
179 Followers 450 Following Official account for Fahr Beyond. We are a charity that supports people with #FahrsDisease & #Fahrs like conditions, to educate & research. #Parkinsons #PFBC
The #ERNReCONNET webinar "IgG4 related disease: a challenge in the diagnosis" by Emanuel Della Torre moderated by Tobias Alexander (#IgG4 Disease Coordinators) is now available on our YouTube channel (don't forget to subscribe!) youtu.be/6H2p8MNBTA0
I made my nephew this octopus. Nephew: “I do not like that octopus.”
IgG-4 related disease: A mini-review Read More: rarediseasesjournal.com/articles/igg4-… #Minireview #IgG4relateddisease #Systemicdisorders
🤔 Wondering how to predict poor prognosis in #IgG4relateddisease? Human epididymis protein 4 (HE4) could be a useful #biomarker as it correlates with 🔹 baseline #clinicalfeatures ⭕ internal #organdamage 🔸 degree of #fibrosis rmdopen.bmj.com/content/8/2/e0…
A huge milestone for the IgG4-RD community was recently reached, as IgG4-RD was approved as a valid diagnosis for reimbursement purposes in the ICD–10–CM. But what exactly does that mean? Learn more about the groundbreaking approval from @HCPLiveNews: shorturl.at/htz26
Thought I would share our original concept of the changing face of how we diagnose inflammatory myopathy / myositis (courtesy of Thomas Khoo). The colour version is more impactful than what made it to the review nature.com/articles/s4158… [nature.com]
How to train your brain: Thread 🧵
SLE Lab Tests Sensitivities & Specificities
Rare but Critical: Understanding Bleeding Manifestations in Antiphospholipid Syndrome (APS)
Methodologies for detecting anti-ds DNA antibodies
SLE: Essential Laboratory Tests with sensitivities and specificities
Distinguishing Lupus Flares from Infections: How?
How can we assess an individual's ESR in the absence of baseline values?
HOW CAN WE KNOW THE NORMAL CRP LEVEL OF A PERSON WHEN WE DO NOT HAVE A BASELINE VALUE?
Day 1 of #RRW23 in the books!🙏 So many insightful lectures on how to be a successful #researcher and presented our work about viral hepatitis screening and serology differences in #myositis @SMahmoodMD #ACRX23
Excited to spend 3 years with these amazing ladies learning to become a Rheumatologist @BrighamWomens. #blackfleececeremony :)
We really are the perfect match. Apparently to be a Brigham Rheumatology fellow you have to love pellegrino water, cats, and geeking out about consult cases over pasta. @BrighamWomens @BrighamResearch
A year ago at ACR @avalle419 and I were applying to fellowship and now we are at our dream programs 🤩! Can’t wait to see where these amazing women @RaisaLomanto and @michelleb268 end up next cycle ❤️#ACR23 #rheumTwitter
Honored to present my work on pregnancy outcomes and comorbid infectious myopathies in myositis at #ACR23 . Couldn't have done it without my mentor @SMahmoodMD !
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