Ben's Friends @bensfriends
#BensFriends is a network of #patientcommunities for people with #raredisease and #chronicillness. 501c3 Nonprofit: https://t.co/X2Pip2rsIz bensfriends.org Worldwide. Founded, Austin TX Joined April 2009-
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This looks really helpful!
This looks really helpful!
Raynaud's diagnosis typically involves a comprehensive physical examination, supplemented with blood tests to exclude associated medical conditions. More on our FAQs page , here: bit.ly/3bL8xkT #raynaudsawareness #raynaudsaware #FAQs
The ongoing demands of taking care of someone else can cause stress, weight gain, lack of sleep and isolation. That's why it's so important to take care of yourself. Watch these tips! #selfcare #caregiver
No one has to struggle alone. Free. Anonymous. International. Peer to peer support. bensfriends.org #raredisease #chronicillness
To everyone living with myositis, to the caregivers who give their all, and to our supporters who stand with us — your love and resilience inspire us every day. Wishing you a Happy Valentine's Day from all of us at TMA!
Your friends & family may not get you. But we do. Check out our free, anonymous, PEER to PEER rare disease support communities. No need to wait for a monthly meeting. bensfriends.org/community-list/ #chronicillness
Join a free, anonymous, online community today bensfriends.org/community-list/ #chroniccondition #chronicillness
Do you experience pain in your extremities when exposed to cold temperatures? Tingling? Swelling? Throbbing? livingwithraynaudsdisease.org #RaynaudsAwareness
It's February, which means we're officially closer to Rare Disease Day - the biggest event of the year in our calendar! Did you know? There are 6000+ identified #RareDiseases. #RareDiseaseDay #ShareYourColours #LightUpForRare @rarediseasedayofficial
The #RareImpactAwards celebrate people and organizations making great strides to benefit the #RareDisease community. Nominations for these awards are OPEN NOW! Awards will be presented on June 8 in Los Angeles. Nominate your rare hero before the deadline: bit.ly/3HvpEYM
Most congenital heart defects are diagnosed during infancy, but some don't know they have defects until they develop symptoms as an adult. Recovery becomes more manageable when you have the right kind of emotional support atrialseptaldefectsupport.org #AmericanHeartMonth
Inspiring read! How I've Learned To Live With A Chronic Illness That Has No Cure -- goo.gl/alerts/UQKvdP #GoogleAlerts #lupus #invisibleillness
Did you know you can dedicate a gift? Is there a medical professional or patient you would like to honor? bensfriends.org/give-a-gift-do… #raredisease #chronicillness
Traumatic brain injury awareness month. Patients. Caregivers. Support is here traumaticbraininjurysupport.org #TBI
Former professional golfer and broadcaster, @Kstupples needed hope and a resource. She reached out to another golfer who battled #GravesDisease We get it! Ben's Friends connects like-minded patients with the same disease or conditions. golfweek.usatoday.com/2023/10/29/kar…
Safety tips for winter sport adventurists: 1️⃣Wear a helmet and other protective gear 2️⃣Check with your doctor about your medications which may cause dizziness or fatigue If anyone you know has been diagnosed with a traumatic brain injury visit traumaticbraininjurysupport.org #TBI
Staggering Statistics Did you know that people with rare diseases make up 5% of the world's population? This makes it equivalent to the 3rd most populated country in the world! 🌍 #RareDiseaseDay #ShareYourColours #Awareness #LightUpForRare
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
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.
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
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
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Brain Aneurysm Founda.. @BAFOUND
5K Followers 335 Following Globally recognized, leading nonprofit dedicated to providing critical awareness, education, advocacy, support and research funding for brain aneurysms.
National Ataxia Found.. @NAF_Ataxia
3K Followers 675 Following Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
Ataxia and Me CIO 118.. @Ataxia_and_Me
4K Followers 3K Following #Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma
HereditaryNeuropathy @CMTNeuropathy
4K Followers 5K Following (HNF) A non-profit dedicated to translating discoveries to find treatments & cures for #CharcotMarieTooth (CMT) disease & related inherited neuropathies.
AEFAT @AEF_AT
1K Followers 2K Following AEFAT es la asociación de familias afectadas con ataxia telangiectasia en España. La AT es una enfermedad rara y neurodegenerativa que aún no tiene cura.
Thesseat @ThesseatTiDm6
1 Followers 54 Following
Hermina Brodfuehrer @HBrodfuehr5626
42 Followers 5K Following
Dierdre Khu @DierdreKhu88985
66 Followers 5K Following
Thi Jauhar @jauhar57807
68 Followers 5K Following
Oxford-Harrington Rar.. @OHRareDisease
1K Followers 1K Following Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
social media ninja @mrfredbriones
3K Followers 3K Following Multidimensional creative,Marcom Ninja,healthy Filipino food advocate, teacher,filmmaker,Rare Disease Advocate...living with Kennedy's Disease. #kennedysdisease
Mark Wilson @BF_MarkW
0 Followers 2 Following
Dashes of Sashes @zhegal
214 Followers 315 Following Anyone can find dirt on someone. Be the one that finds the gold.
newday @newday77832
35 Followers 33 Following
Partnership to Fight .. @pfcd
2K Followers 2K Following News and information on the fight against the number one cause of death, disability, and rising health care costs: chronic disease.
Institute for Gene Th.. @gene_therapies
2K Followers 416 Following Gene therapy is transforming how we treat diseases. But today’s healthcare system can’t realize its potential. We’re changing that.
Goddard @nesmeysh72230
168 Followers 4K Following See the world on the road, and get to know yourself on the way!
kdlynch @Tweety_pie714
288 Followers 2K Following
Kendra F @SurvivingCFS
4K Followers 5K Following Disabled for a decade due to MECFS| Escaped homelessness | I’m advocating for those who can’t | See highlights tab for my free masking and disability art.
MCDS-Therapy @MCDS_Therapy
752 Followers 2K Following An @EU_H2020 funded clinical trial for the treatment of #RareDisease MCDS. Any related tweets reflect only the views of the project owner.
Sagely Health | Cance.. @SagelyHealth
199 Followers 274 Following Personalized cancer guidance for patients and families. Unbiased scientific expertise is within reach. #cancer #cancercare #cancerresearch #cancersupport
KeepingHope95 @KeepingHope95
498 Followers 2K Following Disabled Advocate, Progressive Liberal, 💙🌈🏳️🌈🏳️⚧️ She/Her Exvangelical & Atheist #FBLC #EDS #LongCovid since 3/2020-pre-vaccine. #pwME ❌MAGA and ❌DM’
Melanie @melaniegold448
475 Followers 1K Following She/Her. Animal Lover. Owner of a #RareDisease. Family. Friends. Democracy. #Resister. Married to my person. ✌🏻🇺🇸🏳️⚧️🏳️🌈🐾🌊❤️ 💙
Top Nun - Charity Cha.. @TopNun2024
568 Followers 511 Following Top Nun - Charity Challenge 2024 - Supporting Ty Hafan, Harrys Fund, Paul Sartori and Hospice of the Valleys - https://t.co/rwQJFRkssG https://t.co/naTXIwFQH0
Serene Sapphire @SereneSapphire
248 Followers 2K Following
Cadi Jordan @cadijordan
11K Followers 7K Following ➳ Behaviour Analyst ↪️ Business, Marketing & Mindset Coach ➳Consultant ➳ Co-Author ➳ Cheerleader➳Clean Beauty Aficionado 👀 : Forbes, LinkedIn ➳ @LatelyAI
Robin Edwards @RobinCFexpert
196 Followers 1K Following The chronic Fatigue Expert- a expert in chronic fatigue Robin Edwards
Nita Alexander @Nita_Alexander_
568 Followers 2K Following PhD Candidate Sociology at JCU. Research: young people's activism, social movements, political participation, human rights & environmental activism.
Rithana Srikanth @RithanaS84780
11 Followers 128 Following Making patient voices a priority for researchers. @Leapcure https://t.co/AEUdNjKbBu
Sierra Phillips @RVAPhillipsFam
26 Followers 168 Following Twin Mom, Rare Mom, Disability Mom, Genetics Enthusiast, and relentless Momvocate #WarsawBreakageSyndrome #RareComend
kelli @kelliamy123
0 Followers 119 Following
Washington University.. @WashURareCare
67 Followers 69 Following NORD Rare Disease Center of Excellence | We provide clinical diagnosis, care for those with rare diseases and are recognized as a leader in rare diseases.
Bruce Smith @Bsmith511258
0 Followers 10 Following
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
Octapharma @OctapharmaGroup
1K Followers 122 Following Welcome to the official account of Octapharma. Get the latest updates on our new health solutions. Check our community guidelines: https://t.co/zC9UZVfLuR
Eliot Stoneciphers @stoneciphers
306 Followers 2K Following #Neurodivergent #MultipleSclerosis #PlantMedicine #AntiCapitalism #DysguCymraeg #ChronicFatigueSyndrome #ME #CFS #AuDHD #Poetry #UBI
Rachael Alexander @R_Alex412
43 Followers 75 Following •All views are my own• Nursing cadet ambassador • St John 🚑 volunteer • raising awareness of Gastroparesis & Ehlers-Danlos •
christina 🇰🇪 @cmutena
3K Followers 857 Following Here to leave the world better than I found it .. 🌻🍷
Raynaud's Assn. @raynaudsorg
4K Followers 594 Following The Raynaud's Association is a national non-profit organization providing support and education to the millions of sufferers of Raynaud's Phenomenon.
Fleming Protocol @FlemingProtocol
2K Followers 5K Following Fleming Protocol is a decentralised platform that connects patients communities and industry collaborators to tackle unmet health needs.
Lady Melissa Bess Ree.. @MelissaBessReed
3K Followers 2K Following Gluten-Free, Culinary, Ambassador. Enjoys| Genealogy, Donnachaidh, Stewart, nature, corgis, cats, art, recipes, mycology #Chef #Celiac #BookAuthor #Lyme #CFS
Gregg Watling @GreggWatling
55 Followers 127 Following
Kitty with the Stripe.. @kittylulabelle
512 Followers 2K Following Ehlers-Danlos Syndrome & other ltd edt. superpowers. 🤟🦓 Who ARE you people following me? Don't you know I talk random shit & have the attention span of a....
Riham Morsy @hurryberry
32 Followers 186 Following ALD carrier and proud to be a mom of three beautiful boys: two of them are ALD warriors.
Rohit Aggarwal @docrota
5K Followers 4K Following Rheumatologist, research in Myositis & Interstitial lung disease, medical director, Myositis Center, Professor of Medicine, @UPMC @pittrheum
Jodi @quietisolation
674 Followers 3K Following cycling, dogs, maybe even dogs cycling - who knows. SCFC always. 🦓
Abbie LaVoie @abbsofsteelish
143 Followers 680 Following
Pam Cusick @PamCusick4
36 Followers 160 Following Helping patients and caregivers connect with researchers around the world.
Goodshop @goodshop
8K Followers 3K Following Like AmazonSmile, but with thousands of retailers on-board. More than $13 million donated to thousands of causes. You shop…we give.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
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.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Brain Aneurysm Founda.. @BAFOUND
5K Followers 335 Following Globally recognized, leading nonprofit dedicated to providing critical awareness, education, advocacy, support and research funding for brain aneurysms.
National Ataxia Found.. @NAF_Ataxia
3K Followers 675 Following Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
HereditaryNeuropathy @CMTNeuropathy
4K Followers 5K Following (HNF) A non-profit dedicated to translating discoveries to find treatments & cures for #CharcotMarieTooth (CMT) disease & related inherited neuropathies.
Top Nun - Charity Cha.. @TopNun2024
568 Followers 511 Following Top Nun - Charity Challenge 2024 - Supporting Ty Hafan, Harrys Fund, Paul Sartori and Hospice of the Valleys - https://t.co/rwQJFRkssG https://t.co/naTXIwFQH0
SWAN UK (syndromes wi.. @SWAN_UK
9K Followers 4K Following SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
BBC Health News @bbchealth
2.3M Followers 4 Following Health & Lifestyle news and features from the BBC, via an automated feed of website headlines.
Hugh Pym @BBCHughPym
103K Followers 1K Following BBC News Health Editor covering all aspects of health (UK and Global). Politics and economics of the NHS. Thoughts from staff and patients always welcome.
social media ninja @mrfredbriones
3K Followers 3K Following Multidimensional creative,Marcom Ninja,healthy Filipino food advocate, teacher,filmmaker,Rare Disease Advocate...living with Kennedy's Disease. #kennedysdisease
Crohn's & Colitis Aus.. @crohnscolitisau
2K Followers 257 Following Empowering people to live fearlessly while we help search for a cure of Crohn’s and colitis.
The Ehlers-Danlos Soc.. @TheEDSociety
24K Followers 6K Following The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
The Partnership to Fi.. @ThePFID
1K Followers 776 Following PFID is a group of patient, provider, and community orgs, health policy experts & others working to advance awareness & action on #AMR & vaccine confidence.
Partnership to Fight .. @pfcd
2K Followers 2K Following News and information on the fight against the number one cause of death, disability, and rising health care costs: chronic disease.
EDS Awareness @EDSawareness1
10K Followers 3K Following An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians.
Amyloidosis Speakers .. @Amyloidosis_ASB
425 Followers 936 Following Closing the healthcare educational gap about #amyloidosis through patient educators; focused on US medical schools & residency programs. #MedTwitter #MedEd
Cure Rare Disease @CureRareDisease
4K Followers 256 Following 501(c)(3) nonprofit leading a nationwide collaboration of researchers and clinicians in order to develop life-saving therapeutics for rare diseases.
Rohit Aggarwal @docrota
5K Followers 4K Following Rheumatologist, research in Myositis & Interstitial lung disease, medical director, Myositis Center, Professor of Medicine, @UPMC @pittrheum
CHOC @chocchildrens
12K Followers 306 Following A mighty brigade sworn to protect the magic of childhood through world-class pediatric healthcare. #DefendersofChildhood
DAISY Foundation @DAISY4Nurses
4K Followers 617 Following Started in memory of Patrick Barnes who died at age 33 to express gratitude for nurses for their extraordinary compassionate care.
Notre Dame Science @NDscience
5K Followers 721 Following The official Twitter account of the College of Science at the University of @NotreDame 🔬☘️
rareLife solutions @rarelifetalks
706 Followers 548 Following building custom communities with integrated knowledge libraries
Graves' Disease & Thy.. @GDATF
6K Followers 663 Following The Graves’ Disease & Thyroid Foundation provides educational and support services for patients with Graves’ disease, thyroid eye disease & related disorders.
FSIG @FabryOrg
376 Followers 70 Following Increasing awareness for those with Fabry disease to create a brighter future, and better lives today - Education, Support, Awareness and Advocacy
Washington University.. @WashURareCare
67 Followers 69 Following NORD Rare Disease Center of Excellence | We provide clinical diagnosis, care for those with rare diseases and are recognized as a leader in rare diseases.
International Pain Fo.. @iPainOfficial
24K Followers 12K Following International Pain Foundation (iPain) providing #ChronicPain community resources since Nov 2006 @NERVEmberProj @iPainLivingMag #OurPain #HopeIsTrue #NERVEmber
Prof AJ McKnight @a_j_mcknight
971 Followers 694 Following Interested in genetics, bioinformatics, kidney & rare diseases, MD, Shelties, books, & randomly weird facts...Prof of Molecular Epidemiology & Public Health
Katherine Bell @katherineabell
6K Followers 1K Following Editor in chief at Goldman Sachs. Previously editor in chief at Quartz and Barron's. Lucky rare-disease parent and co-founder of the @dada2foundation.
Leslie Krongold, EdD @Leslie_GHF
541 Followers 481 Following Podcaster & Blogger. Educator. Support Group Facilitator. Living with Myotonic Muscular Dystrophy. https://t.co/NmWZJP5FIy…
CheckRare @CheckRare
3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
Inside Precision Medi.. @Inside_PM
5K Followers 1K Following Exclusive news, features, and analysis on the research, tools, regulations, and applications driving precision medicine. From the publisher of @GENBio
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
Rare Disease Network @RareCareNetwork
85 Followers 13 Following From patients and families, to students and teachers, providers and advocates, we believe every rare voice matters
The Mighty @TheMightySite
53K Followers 2K Following Making health about people: When we ask how you’re doing, we actually want to know! Download our free app to join a community that gets it ✨
Amyloidosis @Amyloidosisfdn
3K Followers 2K Following Supporting #amyloidosis patients and families while promoting research, education and awareness. 248.922.9610 #AmyloidosisAwareness https://t.co/iNU2rqE6yw
WiTT Cancer Support R.. @WiTTSupportTeam
497 Followers 2K Following The WiTT Group™, Inc., is a company focused on solving the financial and non-financial challenges patients face as they go through cancer treatment.
Raynaud's Assn. @raynaudsorg
4K Followers 594 Following The Raynaud's Association is a national non-profit organization providing support and education to the millions of sufferers of Raynaud's Phenomenon.
SRNA @wearesrna
2K Followers 141 Following The Siegel Rare Neuroimmune Association advocates for people with rare neuroimmune disorders (ADEM, AFM, MOGAD, NMOSD, ON, and TM).
Octapharma @OctapharmaGroup
1K Followers 122 Following Welcome to the official account of Octapharma. Get the latest updates on our new health solutions. Check our community guidelines: https://t.co/zC9UZVfLuR
Streamlabs @streamlabs
391K Followers 2K Following Unleash your live | Take your content to the next level: https://t.co/g9XKHX0pW2 | Need help? Get support: https://t.co/zy2CQwj7k3
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
NYU Grossman School o.. @nyugrossman
13K Followers 884 Following The latest clinical news and research from experts at @nyulangone. Ten specialties ranked in the top 10 nationally by U.S. News & World Report.
Rutgers RWJMedSchool @RWJMS
9K Followers 7K Following News & Information about Rutgers Robert Wood Johnson Medical School
UNMC Dept of Genetics.. @UNMC_GCBA
498 Followers 329 Following With diverse strengths in anatomy, cell biology, bioinformatics, genetics, and cancer research, we train future leaders in biomedicine and basic science.
Washington U. Med @WUSTLmed
26K Followers 2K Following Washington University School of Medicine – advancing human health through research, education and patient care. Teaching hospitals: @STLChildrens, @BarnesJewish
Mott Children's MD @MottDocs
2K Followers 352 Following News and insights for physicians and clinical professionals from University of Michigan Health @mottchildren. Research, case studies and CME opportunities.
MSU Microbiology, Gen.. @MSUMGI
3K Followers 719 Following The official X account of the Department of Microbiology, Genetics, & Immunology @michiganstateu.
UMass Chan Medical Sc.. @UMassChan
14K Followers 4K Following Official X home of UMass Chan Medical School: pioneering education, research and health care delivery. See how we are advancing medicine together.
Boston U Chobanian & .. @BUMedicine
11K Followers 1K Following The official Twitter feed of Boston University Chobanian & Avedisian School of Medicine. Follow us for research news and school information.
University of Marylan.. @UMmedschool
9K Followers 714 Following Founded in 1807, we are the 1st public med school in the US & a leader in medical education, research & healthcare.
LSU Health Shreveport @LSUHS
4K Followers 663 Following We Teach. We Heal. We Discover. | Home to the School of Medicine, School of Allied Health Professions & School of Graduate Studies
University of Kentuck.. @UKYMedicine
1K Followers 220 Following Excellence in education, equitable health care, and transformative research for the health and wellness of Kentuckians and beyond.
KU Medical Center @KUMedCenter
12K Followers 720 Following Official account of KU Medical Center, home to world-class research and the schools of Health Professions, Medicine & Nursing. We partner with @KUHospital.
"I wish I’d heard about SWAN UK sooner" With advances in genomic medicine, you'd be forgiven for thinking that everyone gets a diagnosis, however that’s not the case! @SWAN_UK supports families of #undiagnosed children across the UK - spread the word! #undiagnosedChildrensDay
"My name is Luca, and I have #classicalEhlersDanlossyndrome (cEDS). I had the first symptoms around the age of 11 (1996), when my collarbones dislocated on their own and the doctor downplayed talking about "growing pains". I've always been clumsy in team sports; hitting a…
Sponsors and followers are welcome to join us at 1100 on 14/5 also ... Please let us know so can arrange parking @K9Protection @SHEQSOL @turnercornerls @bensfriends @OnSmallWheels
Rally start @tyhafan HQ Sully on 14th May 1100 (we are there from 1030) please feel free to join us @DevilClair @Scarlettsarmy4 @HarrysFund @McTernan1971 @Christian2178 @HOTVFundraising @Paulsartoriorg @HopeRescue
Rally start @tyhafan HQ Sully on 14th May 1100 (we are there from 1030) please feel free to join us @DevilClair @Scarlettsarmy4 @HarrysFund @McTernan1971 @Christian2178 @HOTVFundraising @Paulsartoriorg @HopeRescue
The journey for patients battling #Cancer can be very difficult. Please watch this short video featuring Heather and learn how she uses WiTT to fight pancreatic cancer. youtube.com/watch?v=z_wtnz…
I just love that there's an entire group of people out there who have no idea that introverted, anti-social, autistic, high anxiety, quiet enjoying people exist in the world.
Jenny (my mother) lived to be 94 and kept her sharp wit and sense of humor until the day she died. Here's your reminder to keep playing and having fun no matter how old you are!
@bensfriends Hi, no you don't need to live in the UK. We welcome and encourage applications from outside of the UK too! 😊
When you look at Google Maps to decide where to live, and find you will be under a flightpath 😱😂
Krishnan Guru-Murthy, "Secret recordings obtained by #C4News shows that the Post Office boss Paula Vennells was briefed about allegations of a covert operations team that could remotely alter sub postmasters accounts from Fujitsu's HQ without them knowing.. That was in 2013"…
Stoma: Teen's 'period pain' turn out to be ulcerative colitis bbc.in/3J1RaOn
Thankfully the heart seems strong 127 over 78 👍
Got an event coming up? Complete our online form and reach a wider audience by showcasing your event on our website! 🤩 Find out more here: ow.ly/vMCF50QUA8m
@raynaudsorg I’m a graphic designer. Using the mouse too much sometimes causes my Raynaud’s to kick in. Not sure if it’s due to overuse of my hand or something else. 🤷🏻♀️
@raynaudsorg I'm retired now but my biggest challenge was air conditioning, especially when it was set to arctic blast. And it always seemed to be blowing right on me. I often had trouble using the keyboard.
Could a 'Rare Patient Passport' could help reduce difficulties & frustrations in communicating health & care needs? Download your copy of ‘The Need for a Rare Patient Passport’: bit.ly/RarePassportRe… And if you would like a passport, please sign up!: forms.gle/LSehpCYiWZTp47…
Happy Rare Disease Day! The last day of February each year is Rare Disease Day. I am raising awareness for Kennedy’s Disease. If you can, please make a donation using our @tiltify link tiltify.com/@original_vide…. Thank you for your support. #RareDiseaseDay #kennedysdisease
Me and my stripey socks are heading to Westminster to celebrate #RareDiseaseDay2024 with @sophie_sainty to represent @Unique_charity and all those affected by rare conditions. @GeneticAll_UK @M4RareDiseases
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