The Lilly and Blair Foundation
@lillyandblair
The Lilly and Blair Foundation is dedicated to creating a better future for our girls and others afflicted with de novo Hereditary Spastic Paraplegia SPG4.
ID: 1604492163949133825
http://www.LillyandBlair.org 18-12-2022 15:02:06
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Center for Global Development
@cgdev
The leading think-and-do tank for #globaldev 🌍 Celebrating 20 yrs of independent research & ideas for global prosperity. #CGDtalks [email protected]
World Health Organization (WHO)
@who
We are the #UnitedNations’ health agency - #HealthForAll. Always check our latest tweets for updated advice/information Support WHO: oneworldhealthforall.org
Genetic Alliance
@geneticalliance
A non-profit network transforming health through genetics. 🧬 We promote openness in health systems, advocacy, empowerment, informed decisions, and access.
AAPD
@aapd
American Association of People with Disabilities (AAPD) #EconomicPower & #PoliticalPower of #PWDs. Retweets do not equal endorsements. Instagram: aapdofficial
Children's National Hospital 🏥
@childrensnatl
We don’t want kids to just grow up, we want them to #GROWUPSTRONGER. Official feed for Children's National Hospital.
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
Disability Advocates
@disabadvocates
Our Mission: To work alongside people with disabilities as they seek to lead self-directed lives & to advocate for accessible & welcoming communities.
Kennedy Krieger
@kennedykrieger
Dedicated to helping children and young adults with disorders of the brain, and spinal cord succeed in family, school, & community life.
The Arc of the United States
@thearcus
Working towards respect, dignity, and inclusion for all people with intellectual and developmental disabilities and their families.
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.
Johns Hopkins Children's Center
@hopkinskids
Johns Hopkins Children’s Center is ranked among the best children's hospitals in the nation. #KidsHealth #ForTheKids
Stefan Hauser
@stefan__hauser
Group Leader | Neuroscience | iPSC | DZNE | HIH | hauserlab.com
ABILITY Magazine
@abilitymag
For decades; pushing boundaries, breaking limits, shedding light on unconscious bias, & providing new insights in2 individual levels of ability.#ABILITYMagazine
Bioness Medical, Inc.
@bionessliveon
Bioness develops medical technologies for individuals affected by central nervous system disorders.
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.
Mustafa Sahin
@sahin_m
developmental neurobiologist, child neurologist
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Able Magazine
@ablemag
Bringing you #disability news and features. We're about what people can do, not what they can't! Visit our website for more information.
EveryLife Foundation
@everylifeorg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
MDS
@movedisorder
MDS is a professional society of clinicians and other healthcare professionals interested in movement disorders. #movedisorder @MDJ_Journal | @MDCP_Journal
National Council on Disability (NCD)
@ncdgov
Official X account of the National Council on Disability, an independent federal agency. For more info visit our official website at NCD.gov
Paralympic Games
@paralympics
#Paralympics - the home of the Paralympic Movement. ❤️💙💚
RareDiseaseFdn
@rarediseasefdn
Changing the lives of patients affected by rare & undiagnosed diseases through social support, advocacy & treatment-focused research. linktr.ee/Rarediseasefdn
Abilities Expo
@abilitiesexpo
#AbilitiesExpo is the leading event offering life-enriching products, services, education & fun to the community of people with disabilities nationwide.
Drexel University College of Medicine
@drexelmedicine
Tweets from Drexel University College of Medicine, training future physicians and scientists; managed by the Marketing & Communications Department.
debra of America
@debraofamerica
Leading national nonprofit improving the lives of those impacted by Epidermolysis Bullosa (EB) —"The Worst Disease You've Never Heard Of."
Rare Diseases Clinical Research Network
@rarediseasesnet
NIH-funded network fostering collaborative research among 20 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.
Genetic Alliance UK
@geneticall_uk
National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
Beyond the Diagnosis
@beyondthedx
Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
NCATS
@ncats_nih_gov
Official account. nih.gov/web-policies-n… nih.gov/news-events/so… engagement ≠ endorsement
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.
Pankaj Agrawal
@agrawalpb_lab
Neonatology Chief @univmiami, @jacksonhealth, Professor of Pediatrics & Genetics, Project Newborn Chair, Visiting Prof @Harvard, scientist @bostonchildrens
Child Neurology Foundation
@child_neurology
A national non-profit working through advocacy, research and education to ensure optimal care for children living w/neurologic conditions #ChildNeurology
Brain
@brain1878
Brain: A Journal of Neurology. Publishing leading studies in neurological science since 1878.
Scottish Rite for Children
@srchildren_
Scottish Rite for Children is a nonprofit pediatric orthopedic hospital in Dallas, Texas. 214-559-5000
Rick Thompson
@ricksthomp
Evolutionary biologist, turned CEO for Beacon: for rare diseases. All views my own.
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.
Rare Advocacy Movement
@rareadvocacy
Network of people with #RareDisease #LivedExperiences dedicated to evolving the #LivingRare experience into opportunities for the global community to thrive.
Chan Zuckerberg Initiative
@chanzuckerberg
We're a new kind of philanthropy that builds tech and partnerships to accelerate progress in science, education and create a thriving California Bay Area.
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.
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
CheckRare
@checkrare
Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
Ultragenyx
@ultragenyx
At Ultragenyx, our vision is to lead the future of rare disease medicine. Community Guidelines at: ultragenyx.co/community
CureSPG50
@curespg50
To help children affected by the SPG50 disease
Ataxia and Me CIO 1184030
@ataxia_and_me
#Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma
Laura Lewandowski
@lauralewmad11
Peds rheum, Global health lupologist. Runner, poet, mother. Seeker of truth and excellent ice cream. Views are mine, do not reflect those of employer. She/hers.
Rare Action Network
@rareaction
Advocating at the state & federal level to improve the lives of the 30 million Americans with #RareDiseases. #RareAction: a #NORD (@RareDiseases) initiative.
AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.🚀
Katharine Alter
@alterkatharine