PRISMS, Inc.
@smsprisms
PRISMS is a 501(c)3 dedicated to providing info & support to families affected by Smith-Magenis Syndrome, sponsoring research and increasing awareness of SMS.
ID: 243855814
http://prisms.org 27-01-2011 23:38:54
1,1K Tweet
656 Followers
864 Following
autism speaks
@autismspeaks
Join us in creating a world where all people with autism can reach their full potential. 💙
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
BCMHouston
@bcmhouston
Baylor College of Medicine is a health sciences university that creates & applies science and discoveries to further education, healthcare & community service.
autismsociety
@autismsociety
We create connections, empowering everyone in the Autism community with the resources needed to live fully. RT does not imply endorsement.
CISCRP
@ciscrp
A nonprofit organization educating the public and patients about the role that clinical research plays in advancing public health.
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.
Kids Brain Health Network
@kidsbrainhealth
Kids Brain Health Network is focused on early diagnosis, treatment & support for kids with neurodevelopmental disabilities. Follow us on IG: @ kidsbrainhealth
UCB News
@ucb_news
A global biopharma company focusing on creating value for people living with neurology and immunology diseases. We are inspired by patients, driven by science.
NMQF
@nmqf
From data to action to advance the #HealthEquityMovement, since 1998 National Minority Quality Forum has been the nation’s largest minority health org. nmqf.org
Pulse Infoframe
@pulseinfoframe
Accelerating science and research with real world evidence, from real patients, in real time. #realworldevidence #raredisease #cancer
Rachel Franciskovich
@rd_fran7
Pediatric Genetic counselor 🧬🧸all views expressed are my own.
Kristin Smedley😎
@kristinsmedley
Philly sports lover | Mom of 3 Thrivers (2 born blind #CRB1) Master storyteller & change-maker. Discover our journey in the upcoming #CurveballMovie 🎬⚾️
kerry boyd
@boydker
Psychiatrist, specialty interest in developmental disabilities, AMS Phoenix Fellow
Brian Shuch, MD
@kidneycancerdoc
UCLA Kidney Cancer Program Director, SUO Fellowship Director, Professor of Urology.
National Coordinating Center for the RGNs
@nccrcg
Join us for the 5th Annual Public Health Genetics and Genomics Week from May 20-24. #PHGW #PublicHealthGenetics #PublicHealthGenomics Retweet/likes≠endorsement
Sheila Hernandez
@sheilahdzvale
Spark Therapeutics
@spark_tx
Our mission is to unlock the power of gene therapy to accelerate healthcare transformation. Page monitored business hours M-F; sparktx.com/contact-us/
bioRxiv
@biorxivpreprint
Daily summaries of preprints posted in each bioRxiv Subject Area. Find ways to get social media alerts to individual papers at biorxiv.org/alertsrss
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Nigel Over
@nigelover
All views my own. Open to providing pro bono expertise to genetic syndrome charities. Freelance leadership for charity projects considered.
TREND Community
@trendcommunity
TREND Community is a digital health company using artificial intelligence to capture current perspectives of rare communities from their social data streams.
Amicus Therapeutics
@amicusrx1
We are a global biotech company focused on discovering, developing & delivering high-quality medicines for people living with rare diseases.
Leeann Stevenson
@leeanstevenson
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Genetics in Medicine
@gimjournal
Genetics in Medicine, an official journal of @TheACMG Site use policy: bit.ly/gimconduct. Cover image by istockphoto.com user fanjianhua.
Chow Lab
@chowlab
Harnessing the power of natural variation --- Model organisms --- Disease modifiers --- ER stress --- Rare disease --- Dept. of Human Genetics / @UUtah
Claudio Toma
@claudio_toma_
Neurogeneticist @CBMSO_CSIC_UAM & @neuraustralia hunting genes for #autism, #schizophrenia and #bipolar disorder. Based in 🇪🇺🇦🇺
FDA Patient Info
@fdapatientinfo
The FDA Public Engagement Staff covers a range of topics and conducts numerous activities that are of interest to patients. This account is now archived.
Richards Lab
@richardslabuob
Research into sleep and behaviour in neurodevelopmental conditions led by Professor Caroline Richards @unibirmingham (retweets are not endorsements)
IndoUSrare
@indousrare
IndoUSrare is a non-profit public charity organization based in the US, which addresses the unmet needs of diverse patients with rare diseases globally.
Breaking Down Barriers
@barriersdown
BDB is a network of organisations working together to improve the lives of people from marginalised communities and addressing health inequalities.
Probably Genetic
@probgenetic
Rare genetic conditions can take years for doctors to diagnose. #ProbablyGenetic is a personalized healthcare company working to help you find answers.
Minority Genetic Professionals Network
@minoritygenetic
We are a space for racially & ethnically diverse professionals & students in genetics to connect & support increased access to services in minority communities.
TheRareFair
@therarefair
Powered by @tda4rare, The Rare Fair is the original virtual event designed for all members of the rare disease community. therarefair.com
PA Rare Disease Advisory Council
@pararedisease
To improve the quality of life for all those affected by rare diseases in Pennsylvania.
COMBINEDBrain
@combined_brain
Consortium for Biomarkers and Outcome Measures for Neurodevelopmental Disorders eurekalert.org/news-releases/…
GetYourCodon
@getyourcodon
Clinical Scientist in Genomics 🧬 Keen to discuss and learn about all things Epilepsy & Autism 💜
Raising Rare
@raising_rare
Raising Rare focuses on two families’ stories as they navigate a largely uncharted path: the search for treatment, help, and strength raising a rare child.
Harmony Biosciences
@harmonybio
A fresh approach to helping patients thrive. View guidelines: bit.ly/3KYPBSS
Kevin Sperry
@kevinsperry9
Follower of Christ | QB @FSUFootball
Gabi Sperry CKD, CAPS
@gabi_sperry
God. Grit. Grind. Grace. Mama of 3. Residential Designer. CKD. CAPS.
BlackInGenetics
@blackingenetics
BIG is an organization dedicated to amplifying voices and work by Black-identifying geneticists. #BlackInGenetics
Iwase Laboratory
@iwase_lab
Official account of the Iwase Lab research group @umich. We study chromatin dynamics in the brain & rare disease. PI @brainchromatin
PEP Talks
@primepeptalks
PEP=Patient Engagement Practices! We amplify the patient voice to deliver a triple win for patients, Pharma, and society. - Prime Patient of @PrimeGlobalBuzz
Zain Dardas
@zain_dardas
PhD Candidate studying the mechanisms underlying complex structural variation at @LupskiLab @BCMhouston.
BCM Department of Molecular and Human Genetics
@bcmgenetics
The Department of Molecular and Human Genetics at @BCMHouston is transforming medicine, research, and education in genetics and genomics.
The Dash Alliance
@tda4rare
We connect the dots in rare.
Publer
@publer
Your ultimate social media management platform 💚 Plan, Schedule, Collaborate, Analyse & Report Explore Publer for free: publer.com
Expecting Health
@expecthealthorg
Expecting Health was founded by a group of women with a simple idea: families deserve and should expect more – more support, more guidance, better health.
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]
Daniel Family
@team_danielx5
Ask Gene
@youcanaskgene
This is Gene. She likes pink jean jackets. She also likes Gene Therapy. Do you want to know more about Gene Therapy... Ask Gene!
Wellcome Genome Campus
@wellcomegenome
The Wellcome Genome Campus is home to some of the world's foremost research Institutes and organisations in #genomics, #biodata and #computationalbiology.
Sarah Elsea
@sarah_elsea
mom, daughter, sister, friend, geneticist, dog lover, baker, professor, scientist, advocate, rare disease researcher...
3billion
@3billionrare
'Diagnosis to treatment for rare disease patients' - 3billion is dedicated to empowering rare disease patients by providing affordable genetic test.
Shigeki Iwase
@brainchromatin
Chromatin in the brain
AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.🚀
From the Labs at Baylor College of Medicine
@bcmfromthelabs
From the Labs at Baylor College of Medicine spotlights the newest and most interesting research information from the bench at the College.
Salem Oaks
@salemoaks
As a patient foundation you have already done the work to bring patients together. Now is your chance to get their voices heard by pharmaceutical companies.