FSIG
@fabryorg
Increasing awareness for those with Fabry disease to create a brighter future, and better lives today - Education, Support, Awareness and Advocacy
ID: 2400406968
https://www.Fabry.org 20-03-2014 20:28:16
891 Tweet
378 Followers
69 Following
U.S. FDA Recalls
@fdarecalls
Our posts are FDA Approved! Get notified about the U.S. Food and Drug Administration's recalls. Privacy Policy - fda.gov/privacy
GreatNonprofits
@greatnonprofits
Connect to what matters — learn about and share your experience working with top-rated nonprofits making a difference.
Sanofi
@sanofi
We chase the miracles of science to improve people’s lives. Interactions with this account must comply with the Terms: bit.ly/sanofi-terms
Kevin J. Fowler Principal The Voice of the Patient
@gratefull080504
Consulting business: recruiting early intervention kidney disease + kidney transplant trials;Moved from Chicago back home to STL; Move treatment of CKD upstream
NASEM Health
@nasem_health
We help leaders in government and the private sector make evidence-based decisions on health policy and practice.
Accessia Health
@accessiahealth
Accessia Health is a leader in nonprofit #patientassistance for people with rare and chronic health conditions. We speak health and human.
Sanofi US
@sanofius
We chase the miracles of science to improve people's lives. For U.S. residents only. Interactions on this page must comply with Sanofi US terms: bit.ly/US-terms
bluebird bio
@bluebirdbio
We’re pursuing curative #genetherapies to give patients and their families more bluebird days. Guidelines: bit.ly/bbbGuidelines
U.S. FDA
@us_fda
Our posts are FDA Approved! Privacy Policy - go.usa.gov/xFfG8 FDA Authentic Accounts - bit.ly/FDASocial
jayne gershkowitz
@jgersh1115
Beyond the Diagnosis
@beyondthedx
Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
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.
MPS Society UK, here for those with rare diseases
@mpssocietyuk
MPS Society UK is the only registered charity providing professional support to those affected by MPS, Fabry and related diseases.
Fabry, Australia
@fabryaustralia
Fabry Australia is an incorporated patient organisation founded in 1994 by patients diagnosed with a rare genetic condition called Fabry Disease.
Megan Fookes
@fookes1
RDLA
@rareadvocates
A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
Sandy Nelson
@snnelson1313
Fabry International Network
@fabryintnetwork
FIN is an independent & vibrant network of Fabry patient associations whose purpose is to collaborate, communicate, promote best practices & empower patients
Nadia
@antigonegrown
Health Psychologist; Former Op-Ed Project Public Voices Fellow
The Assistance Fund
@assistancefund
An independent charitable patient assistance organization working to see the day when no person goes without treatment because of an inability to pay.
WORLDSymposia
@worldsymposia
We're Organizing Research on Lysosomal Diseases
FancyKey
@fancykey
FancyKey is #1 fully customizable keyboard. Fancy your chatting with FancyKey. Available on App Store, Play Store & Amazon App Store.
Amicus Therapeutics
@amicusrx1
We are a global biotech company focused on discovering, developing & delivering high-quality medicines for people living with rare diseases.
Canadian Fabry Assoc
@cdnfabry
Julia Alton
@altonjulia
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
ThinkGenetic, Inc.
@thinkgenetic
Finding individuals in need of a diagnosis. Supporting pharma, research institutions, and healthcare systems. #RareDisease #ai
AVROBIO
@avrobio
We are a clinical-stage lentiviral gene therapy company, powered by our plato® gene therapy platform. Our vision: bring personalized gene therapy to the world.
Brian Jones
@brianejonesmd
Mountain Kidney and HTN | Nephrology 2023 @DukeKidney | IM 2021 @MayoMN_IMRES | MD 2018 @UofSCSOMG | #FabryDisease
FSIGN
@fsign_2001
Fabry Support & Informatie Groep Nederland is een onhafhankelijke patiëntenvereniging voor mensen met de ziekte van Fabry
Living in the Light
@stayhomeforrare
#IStayHomeForRare join us in solidarity with those staying home protecting the lives of children, family members, and friends living with rare diseases.
ProtalixBio
@protalix_bio
Protalix (NYSE: $PLX) is dedicated to developing and commercializing therapeutic proteins with clinically improved profiles, produced by our ProCellEx® system
cardio-met
@cardiomet_ce
Your only source for JOINT-ACCREDITED SoMe-delivered, serialized professional cardiometabolic education. Physicians, nurses, pharmacists--come one, come all!
Chiesi Global Rare Diseases
@chiesigrd
We are making a rare difference.
The Assistance Fund (TAF) Advocacy
@tafadvocacy
Advocating for public policies that ensure access to clinical care, diagnostic testing, therapy, and treatment at a cost within reach.
United For Charitable Assistance
@ucapatients
UCA is a patient-led, patient-focused coalition dedicated to education, advocacy and awareness about the importance of non-profit charitable assistance.
I Am Essential
@i_am_essential
“I Am Essential” unites diverse patient & community orgs. to ensure access to quality & affordable healthcare for millions of people enrolled in ACA coverage.
Sabina Kineen
@sabkin12
Trying my best to love, help, & respect others in this crazy world. #RareDisease #PatientVoice #FabryDisease #EhlersDanlos #MentalHealth #HealthEquity
Living in the Light
@levigersh
Shifting the focus from patient to Person. Empowering the global rare disease community through advocacy, compelling photography and personal narratives.
Sangamo Therapeutics
@sangamotx
Committed to translating our ground-breaking science into genomic medicines that transform patients’ lives.
CheckRare
@checkrare
Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
Idorsia
@idorsia
The purpose of Idorsia is to discover, develop and bring more, innovative medicines to patients. See our community guidelines: bit.ly/3gtrhr7
CORE Kidney Program
@core_kidney
The CORE Kidney Program uses a wide range of resources to create an innovative way to improve patient health and perception.
Protalix BioTherap.
@bioworldx
ThinkGenetic Foundation
@thinkgeneticfdn
A Non-Profit 501(c)3 Charity Helping to Educate and Empower Those Living with Genetic Conditions #raredisease #genetics
AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.🚀
Pamela Graves-Moore
@pamela_g_m
Make the world better.
Remember The Girls
@remember_girls
Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers
Lysosomal&Rare Disorders Research&Treatment Center
@ldrtc_usa
#LDRTC is a #NonprofitOrganization with a vision to provide high quality care for patients and families with #LysosomalStorageDisorders and other #RareDiseases
Fernanda Copeland
@fernandacopela3
My Fabry Disease
@myfabrydisease
Having Fabry Disease has a huge impact. It's amazing how few people, including medics, know about it, or understand how it affects people. Let’s change that.