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
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Kevin Pho, M.D.
@kevinmd
Physician | KevinMD.com | The Podcast by KevinMD
Johns Hopkins University
@johnshopkins
America’s first research university. Leading discovery and sharing knowledge to better the world since 1876.
Jonas Dodoo
@eatsleeptrain_
Head Coach @speed_works_ . Consultant to Pro football/rugby for speed/power/rehab training speedworks.training
Duke Health
@dukehealth
Official Twitter: Duke Health-Academic health system dedicated to high-quality patient-centered care, research, education & improving community & global health.
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
The ALS Association
@alsassociation
Fighting ALS on every front through research, care services, and advocacy. Community guidelines: bit.ly/2nx5xE4
National MS Society
@mssociety
We will cure multiple sclerosis while empowering people affected by MS to live their best lives.
Duke University
@dukeu
Fueled by creativity, informed by scholarship.
Stuart Phillips (he/him)
@mackinprof
Dad, Husband, Distinguished Univ Professor, tier 1 @CRC_CRC, @McMasterU; opinions mine. Scholar: bit.ly/mackinprof. Linktree: linktr.ee/mackinprof
Penn
@penn
Official profile for news, events and interesting updates from the University of Pennsylvania. Account managed by University Communications.
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.
Call me Keir
@rugby_str_coach
Social agitator. I started, built and sold Strength Coach Network.
Amgen Foundation
@amgenfoundation
The Amgen Foundation seeks to advance science education to inspire the next generation, & invests in communities. Community guidelines: bit.ly/smcgl
Bruce Feiler
@brucefeiler
Writer, Speaker, Traveler, Father 📚 LIFE IS IN THE TRANSITIONS, THE SEARCH, SECRETS OF HAPPY FAMILIES, COUNCIL OF DADS 📰 Substack: The Nonlinear Life
Native Blueberry
@nativeblueberry
Wildlife Photography in Manhattan and Maine - New York City Wildlife Facebook Group Link Below.
Bruce Rosenstein
@brucerosenstein
Author, Create Your Future the Peter Drucker Way (McGraw-Hill and Brilliance Audio, 2013); Managing Editor, Leader to Leader
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
Sophia Nimphius
@docsoph
Here to challenge & inspire change| Pro-Vice-Chancellor (Sport) | Professor of Human Performance | “Hard things are things worth doing”
Marc Kissel (marckissel.bsky.social)
@marckissel
Paleoanthropologist at Appalachian State University (the real ASU!) & co-creator (w/ @JennaKissel) of 2 daughters. He/His.
MIT Picower Institute
@mit_picower
Dedicated to understanding the mechanisms underlying learning and memory and related brain functions and disease. Profile art by @toddsiler
the Foundation for Peripheral Neuropathy
@foundationforpn
Through research funding, education + advocacy, our work improves the lives of patients living with peripheral neuropathy, accelerating treatment development
Ethan Perlstein bio/acc
@eperlste
ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, ceo @endrarediseases, solo vc @AngelList, evo pharmacologist, mTOR worshipper, cofounder of K&L, $CURES
NINDS
@nih_ninds
Official account of the National Institute of Neurological Disorders and Stroke (NINDS), part of the @NIH Privacy Policy: go.usa.gov/xXnvV
Stuart McMillan
@stuartmcmillan1
CEO @ALTIS | Coach
Chris Bishop
@drchrisbishop
Head of Department (Interim) + Associate Professor of Strength & Conditioning @MDX_LSI, Medical & Scientific Advisory Committee @RandA, @ETPI + @LETgolf
Håkan Andersson
@sprintcoachswe
Sprintcoach Working at the High Performance Centre in Växjö Sweden. All views are my own
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.
Neuberger Berman
@neubergerberman
Neuberger Berman is a private, independent, employee-owned investment manager. Visit nb.com and click below for important disclosures.
Sportsmith
@sportsmithhq
Discover high performance with the world’s best. Home of the Pacey Performance Podcast.
Brad Schoenfeld, PhD
@bradschoenfeld
Researcher/educator on muscle building and fat loss. Author: "The MAX Muscle Plan" & "Science and Development of Muscle Hypertrophy." lookgreatnaked.com
American Brain Foundation
@abfbrain
We bring researchers and donors together to cure brain diseases and disorders. #CureOneCureMany 🧵 americanbrainfoundation 🦋 abfbrain.bsky.social
Gareth Sandford
@gareth_sandford
🏅I help Olympic, Pro & College coaches with individualized conditioning 🚀 Find the edge to outlast your opponents in the last 1/4 of performance
JB Morin
@jb_morin
PhD, Full Prof @Univ_st_etienne @LIBM_lab ❖ Assoc. Ed. @JSportsSci ❖ Consultant Sports Performance 🌐 ❖ Amateur coach-competitor: T&F⚽️🏀🚴♂️trail & triathlon
Manhattan Bird Alert
@birdcentralpark
Birds and nature in Manhattan.
Tracy Dixon-Salazar
@tracydixonsalaz
Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
A/Prof Justin Keogh
@drstrength4life
Associate Dean Research, Sport scientist: resistance training & skill acq 4 older adults cancer survivors & athletes BJJ blue belt & proud dad of 2 active girls
Hannah Ritchie
@_hannahritchie
Deputy Editor @OurWorldinData / Researcher at @UniofOxford / Honorary Fellow at @EdinburghUni @EdCentreCC / Not the End of the World: amzn.to/3MdaOci
Dr. Jocelynn Pearl
@jocelynnpearl
Director of Therapeutic Development @ The TAM Center host of Lady Scientist Podcast @LadyScientistP1
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
UPenn Million Dollar Bike Ride by ODC
@mdbride4rare
Riding for rare disease research since 2014! Check us out! milliondollarbikeride.org
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
Luke Rosen
@lukebrosen
Dad of two remarkable kids. Founder of KIF1A.org & Rescue7.org. Works with families affected by neurological diseases & cancer. Firefighter. Baseball & hockey.
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
AGSD-UK
@agsduk
The AGSD-UK provides support and advocacy for individuals and families affected by a Glycogen Storage Disease (GSD).
DISORDER: The Rare Disease Film Festival
@disorderrare
Two rare disease dads took their films for Menkes Disease and USP7 & built them into a festival for all films on rare disease. rarediseasefilmfestival.com
Sharmistha Mitra
@sharmism2
Assistant Professor @UTSWmedcenter @UTSWPedsgroup @utswpediatrics l Child Neurology l Biochemistry l Ubiquitin biology l Glycogen metabolism
Stiff Person Syndrome Research Foundation
@thespsrf
Finding a cure for Stiff Person Syndrome through RArE: Research, Awareness, and Education. #sps #TheSPSRF
n-Lorem Foundation
@n_lorem
Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
BridgeBio Pharma
@bridgebiopharma
Hope Through Rigorous Science Our mission is to discover, create, test and deliver transformative medicines to treat patients with genetic diseases. $BBIO
VitaDAO 💛
@vita_dao
VitaDAO is a community owned collective funding early stage longevity research,governed by $VITA-holders 🧬 👉discord.gg/vitadao
The Orphan Disease Center @ UPenn
@odc_upenn
orphandiseasecenter.med.upenn.edu
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.
Becca Reef, MS CGC
@beccareef
Board Certified GC & Scientific Coordinator for @APBDRF advocating for the rare community 🦓 @UofR, @Penn MSGC, & @BostonChildrens Alum 🧬 she/her
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]
Kayla Glynn
@kaylamayglynn
Scientist 🧬 l Storyteller 🎤 l Facilitator 🪢 l Living Well with Chronic Pain 💪l She/They l 🇨🇦
Christopher Gardner
@gardnerphd
Stanford Nutrition Scientist since 1993. Human nutrition. Food systems. Stealth nutrition. Father of 4 boys. Husband of @DrMichelsonPhD
Yuval Noah Harari
@harari_yuval
Historian and bestselling author of 'Sapiens', 'Homo Deus', '21 Lessons for the 21st Century', 'Sapiens: A Graphic History', 'Unstoppable Us', and 'NEXUS'.
FreeWill
@freewill_hq
We build technology that empowers both donors and fundraisers to make the most meaningful donations of their lives.
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.
Ron Birds
@birdsron
Karra Jones, MD, PhD
@brainisthepath
Neuropathologist @DukePathDept #neuropath | Duke Neuropathology Fellowship Program Director | @neuropathology fan girl | Tweets/RT for education only
Jenn Orthmann Murphy
@jennoligomyelin
Fan of myelinating cells
AnswersinCME
@answersincme
Innovative independent #MedEd solutions for the busy physician with the goal of advancing #healthcare around the world. 🥼⚕🏥 #CME