Ehlers-Danlos CARES
@cureeds
ID: 2350742198
18-02-2014 22:16:16
104 Tweet
158 Followers
49 Following
Geno Likins
@pvfl
Registered Nurse. Medical Device regulations expert. Proud father of Zach. @ZekAtek
NIH
@nih
Official account of the National Institutes of Health. NIH...Turning Discovery Into Health®. Privacy Policy: go.usa.gov/x9svN Engagement ≠ endorsement
NYCEM - Notify NYC
@notifynyc
NYC's official emergency notification system. Important information about emergency events and services. Customer Use Policy nyc.gov/socialmediapol…
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
Kari Muth
@fmdgirl
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.
Rare Diseases
@checkorphan
CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs
EDS Today
@eds_today
Nonprofit - Ehlers-Danlos Syndromes. Sadly, many never receive a proper diagnosis or treatment within their lifetime.
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).
Human Genome Org
@humangenomeorg
The Human Genome Organisation (HUGO) is the international organisation of scientists involved in human genetic and genomic research.
FMDSA
@fmdartery
The recognized leader in the support of Fibromuscular Dysplasia (FMD) awareness, education and research. non-profit (501)(c3)#RUN4FMDSA
notch
@notch
Profile pic is kawaii af. Banner by @telaphoone Some of the jokes are original I have an amazing joke about an airplane that never lands because it's too fast.
Minnesota Department of Education
@mndepted
Ensuring every child receives a quality education, no matter their race or zip code.
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Kathy Niebuhr
@kathy_niebuhr
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Danielle
@bracingmyself
I have Ehlers-Danlos Syndrome (TNXB). My hands are bad so I don't tweet much. This is my #EDS account so I'll only follow you if it's obvious you have EDS too!
Barbara Mikulski
@senatorbarb
U.S. Senator for Maryland
Kyra Bobinet, MD MPH
@drkyrabobinet
CEO & Founder / Physician specializing in healthcare innovation / Behavior change neuroscientist
Alan Brewington
@abrewi3010
#ChronicPain #Rheum #AFIB patient. #Medx alumni & former board member. Graduate of Social Health Network's Patient Leader Program. Obnoxiousness = Bad Pain Day!
CEDSA
@cedsaorg
Proudly helping those who have EDS and bring awareness to the condition. cedsa.org
National Human Genome Research Institute
@genome_gov
Funding research at the forefront of genomics to improve human health. Formerly the Human Genome Project. genome.gov/privacy.cfm
FMD Chat
@fmdchat
501c3 organization for those affected by fibromuscular dysplasia—FMD Chat connects patients, family members & providers via social media. #FMDaware #raredisease
FMDAdvocate
@fmdadvocate
I am a former research nurse & stroke survivor. Now spending my time as an advocate for #raredisease, #FMD , Fibromuscular Dysplasia
Mitchell Widmeier
@m_widmeier
Rare Disease UK
@rarediseaseuk
National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
RareConnect
@rareconnect
🌐Connecting #raredisease patients globally at rareconnect.org. 💻Website help at @RareConnectSup.
SanfordCoRDS
@sanfordcords
CoRDS is the world's only cost-free, international #RareDisease #PatientRegistry - Enroll today and share your #data! bit.ly/2hrrjlS
Rare Genomics
@raregenomics
RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases.
Pam Mace, RN
@pdmace2
Executive Director, FMDSA. Awareness of Fibromuscular Dysplasia-survivor of bilateral carotid and vertebral dissections. Views are my own.
CDC Director
@cdcdirector
@CDCgov Note: Posts prior to 1/20/25 were from former CDC directors. Privacy policy: bit.ly/2MhQ6Hp #publichealth #science #government
Caroline Floyd
@carolinefloyd1
Humor is a must! Mama of 2 boys, wife, lover of antiques, creative writing, health, yoga, passionate to see York County, SC flourish. Above all: Proverbs 3:5
Victoria Barton
@victorialbarton
Christ follower, Alzheimer's Daughter, Wife for Life; Mother to Sons; Nana to Isaiah and Hadlie; Retired Construction Marketer
EDS awareness page
@ehlersdanlos
Support page for Ehlers-danlos Syndrome sufferers.
Rare Disease Report
@raredr
Breaking news, patient stories & FDA updates within the rare disease community. Listen to our podcast: tinyurl.com/RareDRPodcast, hosted by @GiulianaGrossi
Amy Dockser Marcus
@amydmarcus
Health and science reporter for The Wall Street Journal, author of We the Scientists (2023) @riverheadbooks
EDS Awareness
@edsawareness1
An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians.
RDLA
@rareadvocates
A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
Noah Leisen
@leisennoah
LeLe
@lelemoma
Sometimes witty. Sometimes not.
Dr. Amanda Young
@amandayoungpsyd
Licensed Clinical Psychologist. Tweets are my own and not psychological advice. #hcldr #hcsm #spsm #menieres #unashamed
Chane Russell Fate
@chano812
be nice, you never know who you are destroying.
EDSCanada
@_edscanada
Ehlers-Danlos Syndrome Canada. EDS Canada provides knowledge, advocacy and support to individuals and their families living with Ehlers-Danlos Syndrome.
Patty Peek
@peekkandppeek
Ross Williams
@rosswilliamswps
Principal
ethanpeek
@18ethanpeek
just because its a bad idea dosent mean it wont be a good time - earl dibbles jr
Ryan Hanson
@ryanhanson4020