APBD Research Foundation
@apbdrf
Supporting individuals and families affected by Adult Polyglucosan Body Disease (APBD), and accelerating improved APBD diagnoses, care and treatment options.
ID: 619350827
http://www.APBDRF.org 26-06-2012 19:24:32
1,1K Tweet
321 Followers
569 Following
♑ kithanne 🔮
@kithseer
hospice nurse,autistic,PAGAN,gamer,bookworm,photographer,insomniac,rare disease collector,witch,forensic pathologist,animal rights defender,bi,she/her
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.
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
EveryLife Foundation
@everylifeorg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
heidi bjornson
@heidibp
Rare Disease Advocate, #PCD, #RareAsOne Program Manager, @CZIScience, Attorney, Mom
Uplifting Athletes
@upliftingath
Nonprofit organization harnessing the power of sport to build a community that invests in the lives of people impacted by rare diseases.
BlenderWonderWorks
@andreygil23
3D Visionary exploring the Metaverse with Blender. Discover new virtual worlds with me weekly 🔍
Lauren Wilson
@lew_phd_lcsw
Post-Doctoral Fellow #HealthServicesResearch➡️ #SuicidePrevention #BehavioralHealth #IntegratedCare #MuscularDystrophyAdvocate💪🏼📣 #StrokeSurvivor 🧠
Abdullah Almatrafi
@almatrafias
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.
American Brain Foundation
@abfbrain
We bring researchers and donors together to cure brain diseases and disorders. #CureOneCureMany 🧵 americanbrainfoundation 🦋 abfbrain.bsky.social
Tracy Dixon-Salazar
@tracydixonsalaz
Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
Tamara Gilbertson
@philanthropycor
Strategic Program Development, Fundraising, and Social Media Management That Connects Your Community to Philanthropy ~ ❤️
Usama El Safy
@usamasafy
Joanne Hatchett
@sjhatch_joanne
Joanne Hatchett, RN, MS, FNP-retired Family Nurse Practitioner. PSC Partners Seeking a Cure, Medical Science Liaison. Views are my own.
Simons Searchlight
@s_searchlight
Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: bit.ly/SFARI_BASE
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
KAL Research Initiatives
@kalresearch
Impacting rare and neglected diseases through the scientific literature, and unrelenting optimism.
DrJordiDuran
@drjordiduran
Researcher studying the brain. Group leader at @IQSbarcelona. Associate Researcher at @IBECBarcelona. Teaching at @uramonllull. Assessor Científic de @la_marato
Cole Group
@colegroupncl
We are a computational research group @UniofNewcastle led by #UKRIFLF Dr Danny Cole specialising in atomistic simulations in medicinal chemistry and biology.
camille😕
@cam_keene
she/her HU❤️💙
İrem
@iremceyylann
Pankaj K Singh
@pankaj_ksingh
Biologist (Rare disease/metabolism/physiology)/Husband/Dad/Gardener/Traveller/Weekend chef Life-with-science! Retweet is no endorsement.
Jenifer Merriam
@jenifermerriam
Dr.Khan
@drbilal_khan
Physician and Post-Doctoral Fellow in Cardiac Surgery at Northwestern Memorial Hospital.
Lauren Perry
@laurenperry80
#ColoradoNative☀️⛰️ | #RareDisease Advocate🦓 | #ISFJ✌️| #melomaniac 🎶 | #Xennial💾 | #SYNGAP1🧬 mom | Ops Mgr📃 at #SyngapResearchFund | @cureSYNGAP1💜💙💚
CT
@iamdpp72019
Structural biology and vaccine.
Stiff Person Syndrome Research Foundation
@thespsrf
Finding a cure for Stiff Person Syndrome through RArE: Research, Awareness, and Education. #sps #TheSPSRF
Lindsay
@lindsay60659009
Love to search the internet.
n-Lorem Foundation
@n_lorem
Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
Sisters' Hope Foundation
@sistershopealsp
The mission of Sisters’ Hope Foundation is to support and empower families impacted by HDLS/ALSP.
RareRising
@rarerising_org
RareRising, is a 501c3 that delivers research, incubates emerging rare disease entities, and explores solutions to positively impact rare disease communities.
Bahadur Boriyev
@bahadurboriyev
Bahadur
maryam karaminia
@maryam1988k
Board-certified neurologist, interested in neuroimmunology, multiple sclerosis, autoimmune encephalitis 🧠🧘🏻♀️☯️
Institut für Humangenetik 🧬 | Uniklinik Leipzig
@hug_leipzig
Das Institut bietet genetische Diagnostik & ambulante Beratungen an. Zudem erfolgt Forschung zu seltenen Erkrankungen & studentische Lehre am @UKL_Leipzig.
Patients
@patient24353971
Becca Reef, MS CGC
@beccareef
Board Certified GC & Scientific Coordinator for @APBDRF advocating for the rare community 🦓 @UofR, @Penn MSGC, & @BostonChildrens Alum 🧬 she/her
Vh
@vharish50415413
digital org
Fighting the Rare
@fightingtherare
A documentary on the importance of research on rare diseases. Un documental sobre la recerca en malalties minoritàries.
Renske Van Slooten
@renskevslootent
Linda Much
@lmuchmaker
Advanced Mobile Entertainment
@advanced_mobile
To be known, respected and followed in the event industry as a company who sets the example of how to provide impeccable energy and service
apayahlalala
@barbielaila20
Jess
@kirinteimi71219
Lirteel
@lirteel3125
#22
Thethayt
@thethayt244396
#20
Tondit
@tondit160746
Yosuke Niibori PhD
@yosukenrepair
🔬 Scientist, Promoter Designer & Co-founder of Re:Pair Genomics in Toronto. Develop gene therapy for epilepsy, Dravet Syndrome, and rare genetic disorders.
Lonelytears
@lonelytear58696
Eenandinnia
@eenandinnia
Suaminya een Partnernya andin suaminya nia laki2 mencari cinta
Olanrewaju Sam Olayeriju
@oolayeriju24055
Sysho
@syshot_iisbu
Tuesee
@tueseekstnz
CrowdGrow FrontStream Volunteer
@crowdgrow22
We empower campaign owners by connecting them with donors, providing support, and amplifying their causes. #standwithpalestine.
Charlotte Hunter
@mrs_chunter
| Trade Union Official | Ex-teacher | Mother and wife | School Governor | Arthrogryposis | GSD IV | Opinions Own
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]
KIF1A.ORG
@kif1a
We connect families affected by KIF1A and relentlessly work to accelerate research. We need to find treatment for this rare neurodegenerative disease. Fast.
Heather McCullen
@h_salemoaks
I no longer use this account. Please follow me on Bluesky instead. bsky.app/profile/heathe…
Jenn Orthmann Murphy
@jennoligomyelin
Fan of myelinating cells