Chiesi Global Rare Diseases
@chiesigrd
We are making a rare difference.
ID: 1338523872304443401
https://chiesirarediseases.com/ 14-12-2020 16:39:06
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578 Followers
32 Following
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
B Lab
@bcorporation
B Lab is the nonprofit network leading the #BCorp movement and transforming the global economy to benefit all people, communities, and the planet.
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.
United Mitochondrial Disease Foundation
@umdf
UMDF powers the research, education, & support that is advancing treatments for patients and families affected by mitochondrial disorders.
MitoAction
@mitoaction
MitoAction is a 501(c)3 charity, tax id 55-0899427, that provides support, advocacy & educational resources FREE for all those affected by mitochondrial disease
Nat Fabry Diseas Fdn
@fabrydisease1
Our primary goal is to provide education and support to enable people with Fabry disease to live better and longer lives. @jerrywalter
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.
National MPS Society
@mpssociety
The National MPS Society exists to find cures for MPS and ML.
Immune Deficiency Foundation
@immunedeficienc
The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency.
Cooley's Anemia Foundation
@cooleysanemia
Cooley's Anemia Foundation is a US nonprofit dedicated to serving people with all forms of the genetic blood disorder #thalassemia.
ISMRD-Join Our Fight
@ismrd
ISMRD is the leading advocate for families worldwide affected by a Glycoprotein & Related Storage Disease. #RareDisease facebook.com/ismrdcharity
Lissa Poincenot
@lhonpoince
Leber's Hereditary Optic Neuropathy (LHON) is a rare genetic disorder that causes sudden blindness. Raising awareness, connecting families, & raising funds.
Rare Disease Report
@raredr
Breaking news, patient stories & FDA updates within the rare disease community. Listen to our podcast: tinyurl.com/RareDRPodcast, hosted by @GiulianaGrossi
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.
IPOPI
@ipopi_info
IPOPI is the association of Primary Immunodeficiency national patient organisations. Improving awareness, access to early diagnosis and optimal treatments.
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
Jeffrey Modell Foundation (JMF)
@info4pi
JMF is a global nonprofit dedicated to #PrimaryImmunodeficiency Advocacy, Research, Education, Newborn Screening & Genetic Sequencing to #CurePI worldwide 🌎
TIF
@thalassaemiatif
A non-profit organization based in Cyprus advocating for the prevention & treatment of thalassaemia & other haemoglobin disorders & patients' rights worldwide.
LHON Society
@lhonsociety
an information and support network for people diagnosed with LHON, their families and friends
FSIG
@fabryorg
Increasing awareness for those with Fabry disease to create a brighter future, and better lives today - Education, Support, Awareness and Advocacy
Chiesi España & Portugal
@chiesi_es
Nos impulsa el #propósito de mejorar la calidad de vida de las #personas. #SomosBCorp. Consultas sobre seguridad de nuestros medicamentos: bit.ly/3k2jOSN
WORLDSymposia
@worldsymposia
We're Organizing Research on Lysosomal Diseases
Canadian Fabry Assoc
@cdnfabry
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
Chiesi Group
@chiesigroup
International pharmaceutical Group certified B Corp.
Chiesi Russia
@chiesirussia
Chiesi.Mexico
@chiesi_mexico
En Chiesi reconocemos la importancia de una atención médica elevada. Contacto: [email protected] Tel. 800 20000 260 No. de SSA: 213300201B1454
The Rare Disease Company Coalition
@rarecoalition
We are a coalition of life science companies committed to discovering, developing & delivering rare disease treatments for the patients we serve. #OneRareVoice
Chiesi Italia
@chiesiitalia
Chiesi Italia è la filiale italiana del Gruppo Chiesi con sede a Parma. Leggi le Linee guida della community: chiesi.it/termini-di-uti…
CheckRare
@checkrare
Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.