Ben's Friends
@bensfriends
#BensFriends is a network of #patientcommunities for people with #raredisease and #chronicillness. 501c3 Nonprofit: youtube.com/bensfriendsvid…
ID: 33967016
21-04-2009 17:10:05
57,57K Tweet
4,4K Followers
1,1K Following
BBC Health News
@bbchealth
Health & Lifestyle news and features from the BBC, via an automated feed of website headlines.
Katherine Bell
@katherineabell
Executive editor of Bloomberg’s Weekend Edition. Previously editor in chief at Quartz and Barron's. Co-founder of the @dada2foundation.
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
EURORDIS-Rare Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Brain Aneurysm Foundation
@bafound
Globally recognized, leading nonprofit dedicated to providing critical awareness, education, advocacy, support and research funding for brain aneurysms.
National Ataxia Foundation
@naf_ataxia
Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
Rutgers RWJMedSchool
@rwjms
News & Information about Rutgers Robert Wood Johnson Medical School
HereditaryNeuropathy
@cmtneuropathy
(HNF) A non-profit dedicated to translating discoveries to find treatments & cures for #CharcotMarieTooth (CMT) disease & related inherited neuropathies.
International Pain Foundation®
@ipainofficial
International Pain Fnd (iPain) provides #ChronicPain community resources since Nov 2006 @NERVEmberProj @iPainLivingMag #MyPainIsLike #HopeIsTrue #NERVEmber
CHOC
@chocchildrens
A mighty brigade sworn to protect the magic of childhood through world-class pediatric healthcare. #DefendersofChildhood
Leslie Krongold, EdD
@leslie_ghf
Podcaster & Blogger. Educator. Support Group Facilitator. Living with Myotonic Muscular Dystrophy. linktr.ee/glasshalffullo…
The Ehlers-Danlos Society
@theedsociety
The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Raynaud's Assn.
@raynaudsorg
The Raynaud's Association is a national non-profit organization providing support and education to the millions of sufferers of Raynaud's Phenomenon.
Notre Dame Science
@ndscience
The official Twitter account of the College of Science at the University of @NotreDame 🔬☘️
SRNA
@wearesrna
The Siegel Rare Neuroimmune Association advocates for people with rare neuroimmune disorders (ADEM, AFM, MOGAD, NMOSD, ON, and TM).
social media ninja
@mrfredbriones
Multidimensional creative,Marcom Ninja,healthy Filipino food advocate, teacher,filmmaker,Rare Disease Advocate...living with Kennedy's Disease. #kennedysdisease
Crohn's & Colitis Australia
@crohnscolitisau
Empowering people to live fearlessly while we help search for a cure of Crohn’s and colitis.
Hugh Pym
@bbchughpym
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.
NYU Grossman School of Medicine
@nyugrossman
The latest clinical news and research from experts at @nyulangone. The Most Top 10-Ranked Specialties in New York by U.S. News & World Report.
PSC Support
@pscsupportuk
Patient organisation for primary sclerosing cholangitis. Info and support for patients | the PSC App | research towards a cure. #LetsBeatPSC #LetsBeatPSC
Amyloidosis
@amyloidosisfdn
Supporting #amyloidosis patients and families while promoting research, education and awareness. 248.922.9610 #AmyloidosisAwareness amyloidosis.org
SWAN UK (syndromes without a name)
@swan_uk
SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
Partnership to Fight Chronic Disease (PFCD)
@pfcd
News and information on the fight against the number one cause of death, disability, and rising health care costs: chronic disease.
Graves' Disease & Thyroid Foundation
@gdatf
The Graves’ Disease & Thyroid Foundation provides educational and support services for patients with Graves’ disease, thyroid eye disease & related disorders.
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.
EDS Awareness
@edsawareness1
An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians.
Prof AJ McKnight
@a_j_mcknight
Interested in genetics, bioinformatics, kidney & rare diseases, MD, Shelties, books, & randomly weird facts...Prof of Molecular Epidemiology & Public Health
Rohit Aggarwal
@docrota
Rheumatologist, research in Myositis & Interstitial lung disease, medical director, Myositis Center, Professor of Medicine, @UPMC @pittrheum
The Mighty
@themightysite
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 ✨
Streamlabs
@streamlabs
Unleash your live | Take your content to the next level: streamlabs.com/ultra | Need help? Get support: support.streamlabs.com
MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
FSIG
@fabryorg
Increasing awareness for those with Fabry disease to create a brighter future, and better lives today - Education, Support, Awareness and Advocacy
Inside Precision Medicine
@inside_pm
Exclusive news, features, and analysis on the research, tools, regulations, and applications driving precision medicine. From the publisher of @GENBio
Skylarks
@skylarkscharity
A parent-led charity in Richmond helping young people with additional needs, inc their families, to thrive. Winner @NDAward 2020, @QueensAwardVS 2018
rareLife solutions
@rarelifetalks
building custom communities with integrated knowledge libraries
DAISY Foundation
@daisy4nurses
Started in memory of Patrick Barnes who died at age 33 to express gratitude for nurses for their extraordinary compassionate care.
Project Cooper - Charity Fundraising
@topnun2024
Project Cooper - Charity Fundraising 2025 - Supporting Ty Hafan Children’s Hospice and Maggie’s Cancer Care Cardiff
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
Giuseppe Lanzino, MD
@glanzinonsgy
Professor of #NSGY & #radiology @MayoClinicNeuro
Cure Rare Disease
@cureraredisease
501(c)(3) nonprofit leading a nationwide collaboration of researchers and clinicians in order to develop life-saving therapeutics for rare diseases.
Octapharma
@octapharmagroup
Welcome to the official account of Octapharma. Get the latest updates on our new health solutions. Check our community guidelines: bit.ly/3M8ioml
Harry's HAT Charity
@harryshat5
Supporting UK families affected by paediatric #hydrocephalus. We raise awareness, fund research/education and provide sign-posting for families.
thewhitworthgroup
@whitworth_group
Be part of the conversation.
The Partnership to Fight Infectious Disease (PFID)
@thepfid
PFID is a group of patient, provider, and community orgs, health policy experts & others working to advance awareness & action on #AMR & vaccine confidence.
Rare Disease Network
@rarecarenetwork
From patients and families, to students and teachers, providers and advocates, we believe every rare voice matters
Rare Disease Advisor
@raredisease_adv
Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
Alfie
@alfie_watts11
Race Across The World S4 | Level 4 FA Referee | Opinions are my own.
WiTT Cancer Support Registry
@wittsupportteam
The WiTT Group™, Inc., is a company focused on solving the financial and non-financial challenges patients face as they go through cancer treatment.
Manchester Rare Conditions Centre
@mft_imrare
Official Manchester Rare Conditions Centre account. Improving lives of people with rare conditions
Amyloidosis Speakers Bureau
@amyloidosis_asb
Closing the healthcare educational gap about #amyloidosis through patient educators; focused on future and current medical providers. #MedTwitter #MedEd
Washington University Rare Diseases Care
@washurarecare
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.
Mark Wilson
@bf_markw
CheckRare
@checkrare
Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
The Reeds Autism & Sarcoidosis Fund
@reedsfund
We are committed to supporting autism and sarcoidosis awareness, education, and to bring hope to families affected by these diseases!