Rare & Ready: A Genetic Condition Coalition
@rare_ready
Supported by BioMarin & Ultragenyx, the Coalition educates state policymakers on the impact of conditions. Social media guidelines bit.ly/3AzXLue
ID: 1486019357755031558
25-01-2022 16:53:34
525 Tweet
220 Followers
146 Following
TSC Alliance
@tscalliance
The TSC Alliance is a source of hope and support for people with tuberous sclerosis complex so they can live their fullest lives. #HopeNoMatterHowComplex
MLD Foundation
@mldfoundation
The ALS Association
@alsassociation
Fighting ALS on every front through research, care services, and advocacy. Community guidelines: bit.ly/2nx5xE4
Rare Diseases
@checkorphan
CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs
CureDuchenne
@cureduchenne
We are committed to improving the lives of those affected by Duchenne through accelerating research, improving care and empowering the community.
Lupus Research
@lupusresearch
The Lupus Research Alliance is the world’s largest private funder of lupus research. Together with your help, we will conquer lupus.
National Bleeding Disorders Foundation
@nbd_foundation
Dedicated to finding better treatments/cures for inheritable blood/bleeding disorders & preventing complications via education, advocacy, research. #WeAreNBDF
Hydrocephalus Assoc.
@hydroassoc
Our mission is to find a cure for #hydrocephalus & improve the lives of those impacted by the condition.
Dysautonomia Intl.
@dysautonomia
Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
AiArthritis
@ifaiarthritis
International Foundation for Autoimmune & Autoinflammatory Arthritis “We don’t represent the patient voice, we ARE the patient voice.”
APFED.org
@apfedorg
American Partnership for Eosinophilic Disorders, APFED. 501(c)3 org dedicated to patients and their families coping with Eosinophilic Disorders.
healourskin
@healourskin
Our mission is to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.
Oxalosis & Hyperoxaluria Foundation
@ohftweet
The OHF is dedicated to finding treatments and a cure for all forms of hyperoxaluria. Research is the driving force behind our mission!
Dravet Syndrome Foundation
@curedravet
The mission of DSF is to raise funds for research into Dravet syndrome and related epilepsies, while offering support to patients and families.
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.
Immune Deficiency Foundation
@immunedeficienc
The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency.
U.S. FDA
@us_fda
Our posts are FDA Approved! Privacy Policy - go.usa.gov/xFfG8 FDA Authentic Accounts - bit.ly/FDASocial
MedicaidGov
@medicaidgov
Official government account for medicaid.gov Authentication: hhs.gov/web/social-med…
Monica Dudley-Weldon
@mlweldon5
Biotechnology | Applied Legal Professional | Strategist | Life Sciences Consultant | DOD | Subject Matter Expert | Author | KOL | Speaker | VAMO
CCHS Network
@cchsnetwork
A 501(c)3 organization dedicated to raising awareness, funds, and family support for congenital central hypoventilation syndrome (CCHS), a rare orphan disease.
Rare Diseases Clinical Research Network
@rarediseasesnet
NIH-funded network fostering collaborative research among 20 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.
Cure CMD
@curecmd
Cure CMD’s mission is to advance research toward treatments for congenital muscular dystrophies and empower those living with CMD.
RDLA
@rareadvocates
A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
GalactosemiaFDN
@galactosemiafdn
A national, nonprofit, volunteer organization providing information, support and networking opportunities to those impacted by galactosemia since 1985
PTEN Foundation US
@ptenfoundation
PTEN is a tumor suppressor gene. When mutated at birth a patient is at higher risk for many #cancers and #autism. our mission: treatments for PHTS, patient 1st
Global Liver Institute
@globalliver
Global Liver Institute saves lives by empowering patient advocates to collaborate with policymakers, clinicians & industry to drive liver health forward.
Neena Nizar
@neenanizar
Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, thejansensfoundation.org Opinions are my own
FSIG
@fabryorg
Increasing awareness for those with Fabry disease to create a brighter future, and better lives today - Education, Support, Awareness and Advocacy
Cushing's Support & Research Foundation
@csrfnet
Supporting patients in all ways; direct peer contact, trustworthy science-supported resources, community events, access to patient voice research opportunities.
The Sumaira Foundation
@thesumairafdn
Raising global awareness of #NMOSD & #MOGAD, building community, supporting research, advocating for rare disease patients/caregivers.
ICOSEP
@icoseporg
Patient Advocate organizations unite to support children with endocrine growth problems. Please join us and prove good people can create change for children!
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
22q Family
@22qfamily
Taking the Mystery Out of 22q11.2 Deletion Syndrome!
HemoSoCal
@hemosocal
SATB2 Gene Foundation
@satb2gene
Gaucher Community Alliance
@gaucheralliance
GCA is a non-profit organization supporting Gaucher patients and families through peer-to-peer aid, education, advocacy, resources, and networking.
The Canavan Project
@canavanproject
Our mission is to fund and support research to cure Canavan Disease and apply these findings to create therapies for other genetic brain diseases.
Sickle Cell Disease News
@sicklecell_news
We are dedicated to sharing the latest news, research, and sickle cell disease patient perspectives.
Lupus Association
@ladaorg
Improving access to care & quality of life by wielding the patient voice as a catalyst to advance advocacy, education, awareness & research efforts.
The DDX3X Foundation
@ddx3x
The DDX3X Foundation is a non-profit founded in 2016 to help find a cure for the DDX3X Gene Mutation. Visit us at ddx3x.org
OrphanetJournal at BMC
@ojrarediseases
Orphanet Journal of Rare Diseases is fully open access & published by @BioMedCentral (part of @SpringerNature), on behalf of @INSERM.
Denise Brown
@denisembrown3
I support those who care. Current work: @CareYrsAcademy. Launched one of the first online caregiving communities in 1996, sold in 2020. #carelist on Thursdays.
MI Rare Coalition
@mirarecoalition
Dedicated to improving the quality of life for all Michigan residents affected by a rare condition through advocacy, education, and awareness.
UCDavis_Gene_Therapy
@ucdavisgt
Gene Therapy Center at UC Davis Health in Sacramento. We currently have 59 clinical trials of gene and/or cell therapy at UCD & a GMP Facility. Keeping busy! 😊
Cystic Fibrosis United
@cfunited2023
We are a group of patients and parents that are working hard to ensure continued, affordable access to Cystic Fibrosis therapies.
United Porphyrias Association
@unitedporphassc
The Future of Porphyria...Raising Awareness, Research and Therapies
Project 8p
@chromosome8p
Project 8p is a non profit committed to finding treatment with translational research, advocacy and data sharing for Chromosome 8p disorders.
HNRNP Family Foundation
@hnrnp_family
Nonprofit dedicated to serving those impacted by HNRNP-Related Rare Neurodevelopmental Disorders through supporting community and research
The National Adrenal Diseases Foundation
@nadf_adrenal
The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life.