
PA Rare Disease Advisory Council
@pararedisease
To improve the quality of life for all those affected by rare diseases in Pennsylvania.
ID: 1136440229580161026
http://www.pardac.org 06-06-2019 01:10:39
2,2K Tweet
773 Followers
622 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
Jamie Sullivan
@lamshade09

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.
Caregiver Action Network
@caregiveraction
Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for more than 90 million Americans.
Les Turner ALS Foundation
@lesturnerals
The leader in comprehensive #ALS care in Chicagoland
AiArthritis
@ifaiarthritis
International Foundation for Autoimmune & Autoinflammatory Arthritis “We don’t represent the patient voice, we ARE the patient voice.”
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
PA Department of Community & Economic Development
@padcednews
The official Twitter account for Pennsylvania Dept. of Community & Economic Development. DCED enables PA businesses & communities to thrive in a global economy.
State Museum of PA
@statemuseumpa
The State Museum of Pennsylvania in Harrisburg, the official museum of the commonwealth, is a great place for exploration, fun, and discovery.
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
Project ALS
@projectalsorg
Project ALS identifies and funds the most promising scientific research that will lead to the first effective treatments and, ultimately, a cure for ALS.
Brian Dawson
@bkdawson1313
Librarian, @TedXOilCityLibrary founder, autodidact. Paramedic, Police Officer in a previous life. Tweets & thoughts are my own.
PA Department of Transportation
@penndotnews
The official Twitter account for the Pennsylvania Department of Transportation.
NET Cancer Day
@netcancerday
Worldwide NET Cancer Awareness Day is an awareness-raising event coordinated by INCA, the International Neuroendocrine Cancer Alliance.
John Kruk
@johnkruk
Phillies announcer, Proud West Virginian, @battlebroreal battlebrothersfoundation.org cameo.com/johnkruk
Stu Singer, PsyD; M.Ed.
@wellperformance
@MSE | @washmystics 🧠 | DoSo app appsto.re/us/O-mOgb.i. | Course: wellperformancewinfirst.thinkific.com | [email protected]
Ana Mingorance
@cnsdrughunter
🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others. @cnsdrughunter.bsky.social
CdLS Foundation
@cdlsfoundation
Cornelia de Lange Syndrome, promoting research & providing support to individuals with CdLS & their families 860.676.8166 #raredisease #cdlsawareness
Lorraine Braithwaite-Harte
@lorrainebraithw

PA Legislature
@palegis
Roll Calls, Journals, and Committee Meeting announcements from the Pennsylvania General Assembly.
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.
NEALS Consortium
@nealsconsortium
The Northeast ALS Consortium (NEALS) is an international, independent, non-profit group of researchers who collaboratively conduct clinical research in ALS
Stephanie Fischer
@rarepov
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Claire Lordon - “One in a Million” out now!
@clairelordon
Children's illustrator/author & more. Graphic memoir 'One in a Million' out now! Agent @mccarthylit. She/they.🖤🩶🤍💜 bio.site/clairelordon
Erin Moriarty Wade
@emoriartywade
Comms Dir at @carrainc - @AtlBizChron and @Columbia alum - mom of child w/#raredisease - #pinksocks @savvy_coop & #scleroderma workgroup. Chicagoan in FL. 🌊
PA PUC
@pa_puc
Balancing consumer & utility needs to ensure safe, reliable electric, natural gas, telephone, transportation, water & wastewater service at reasonable rates.
SCTPN
@sctpn
SCTPN is a Brooklyn, NY based NPO with a global reach. With #1ViralVoice we speak for #sicklecelldisease.
BarabanLab
@barabanlab
Translational epilepsy research in an academic setting | neuroscience, drug discovery, zebrafish, electrophysiology, cell therapy, precision medicine and more
Tracy Dixon-Salazar
@tracydixonsalaz
Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
PA Emergency Management Agency
@pemahq
Keeping you safe and prepared.💪 Call 911 for emergencies.🤳 Director: @PEMADirector 👨
Pennsylvania Assistive Technology Foundation PATF
@pennsylvaniaatf
Non-profit organization that helps people with disabilities and older Pennsylvanians acquire assistive technology that improves the quality of their lives.
The Genesis Foundation for Children
@thegenfound
The Genesis Foundation for Children funds clinical care and therapy for children born with complex genetic disorders and rare diseases.
Hypersomnia Fdn
@hypersomnianews
We engage, inform & champion our global community to improve the lives of people w/ #hypersomnia & related #sleep disorders. #Beyondsleepy #Narcolepsy #KLS
Nico Meyering: @namestartswithn.bsky.social
@namestartswithn
Chair, Philly's Commission for People w/ Disabilities. VP, @yiphilly. Also: @awesome_dis, @DisMentors HoF. Former: @PhillyACAlumni. Opinions mine, he/him
Arc of Philadelphia
@arcphilly
Advocate to promote active citizenship, self-determination, and inclusion for all.
Dr. Alison Bateman-House
@abatemanhouse
History & ethics of research on humans. Access to investigational meds. Public health is political. Retweet not endorsement. NYU Grossman SOM Medical Ethics
IAPS PediatricStroke
@strokepediatric
Global #nonprofit w/ focus on education, awareness, support, & research for #pediatricstroke. Endorsed by pediatric neurologists, led by parent advocates.
FamilieSCN2A
@familiescn2a
Our vision is to find effective treatments and a cure for SCN2A disorders.
KdVS Foundation
@kdvsfoundation
Koolen-de Vries Syndrome (KdVS) Foundation is a non-profit organization promoting awareness and raising funds for this genetic syndrome.
Bryan Lewis
@advocatekidneys
President, @KidneyCAN. RCC survivor, DC legislative advocate, ASCO mRCC & NCCN Kidney Cancer guidelines panel. IKCC Board member. #KCRS #AcceleratingCures
PA Department of Education
@padeptofed
The official account for the Pennsylvania Department of Education. 🎓
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
LGMD Awareness Foundation, Inc
@lgmdawareness
A 501(c)(3) advocacy organization dedicated to globally raising awareness of the rare neuromuscular diseases known as Limb-girdle muscular dystrophy (LGMD).
PA Department of Insurance
@painsurancedept
Official Twitter account for the Pennsylvania Insurance Department.
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.
Patient’s Right to Know 340B
@340bpatients
The 340B program was formed to help vulnerable patients. Is it delivering on that promise? Patients have a right to know. #340B #PatientsRightToKnow
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Moyamoya Foundation
@moyamoyafdn
A 501(c)(3) organization for people with moyamoya, a rare, progressive cerebrovascular disease. We support research & assist patients with uninsured costs.
SynGAP Research Fund (SRF)
@curesyngap1
#SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 syngap.fund/F78A1 syngap.fund/10 🎙
International XLH Alliance
@alliancexlh
3rd International XLH Symposium, July 1st 2022 in Dublin at UCD.
Reid, McNally & Savage
@lobbyrms
Reid, McNally & Savage is an Albany based lobby firm providing government relations services to our clients for over 30 years.
Superior Mesenteric Artery Syndrome Nonprofit
@smasyndromeorg
We are here to support those with SMAS by providing monetary grants for medical care, to raise awareness about SMAS, & to promote research.
Direct Care Works
@directcareworks
There’s a Human Services Workforce Crisis that affects nearly every human services field. There simply aren’t enough workers to do the jobs. #DirectCarePA
Unite Genomics
@unitegenomics
Unite is developing an all-in-one platform to bridge the gap between the rare disease community and researchers to accelerate the development of treatments and
CS Foundation 💛
@cs_foundation1
The Chondrosarcoma Foundation was created to improve the lives of people living with this rare bone cancer. In loving memory of Shayna E. Kramer.
Adam Johnson - DadVocate
@rarediseasedad
Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Youngtimers
@youngtimersorg
We are a nonprofit dedicated to improving the lives of individuals and families with Familial Alzheimer's disease #EOFAD #AD #Alzheimer’s #FAD #Youngonset
The Aubrey O'Sullivan Foundation - to Cure RBM
@curerbm
We are a nonprofit public charity dedicated to accelerating the research & development of a treatment & cure for Reducing Body Myopathy.
Undiagnosed Diseases Network Foundation (UDNF)
@udnforg
Our mission is to improve access to diagnosis, research, and care for all individuals with undiagnosed and ultra-rare conditions.
Rare Disease and Orphan Drugs Journal
@oae_rdodj
Rare Disease and Orphan Drugs Journal(RDODJ) is an international peer-reviewed, open access, online journal.
Kares Foundation
@karesfoundation
Improving the lives of those affected by KDM5C genetic variants through Advocacy, Research, Education & Support 🧬 linktr.ee/karesfoundation
KBG Syndrome
@kbgsyndrome
KBG Syndrome is an ultra rare syndrome identified by a mutation in the ANKRD11 gene. 1 in 19 Million baby! This account is maintained by the KBG Foundation.
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]
Helping Hands 4 GAND
@gatad2b
We aim to support individuals and families affected by GATAD2B gene variants, to increase awareness, and to work toward research and treatment opportunities.
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.
PADDC
@paddcouncil
The Pennsylvania Developmental Disabilities Council promotes #CapacityBuilding #Empowerment, #Inclusion, #SystemsChange, #Intersectionality, & #SocialChange
HelpCureHD
@helpcurehd
MLB Pitcher Joe Smith & Sports Reporter Allie LaForce charity supporting families & helping eradicate Huntington's Disease. Managed by @AthletesCauses
AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.🚀
Stoke Therapeutics
@stoketx
Stoke Therapeutics is addressing the underlying cause of severe diseases by upregulating protein expression with RNA-based medicines.