NORD @RareDiseases
National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay. rarediseases.org USA Joined October 2009-
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April is #NationalVolunteerMonth, and today we're sharing a story from Kate, a genetic counselor, NORD #RareDisease Report author, and camp director of @McGovernMed's Camp PHEver for kids with #PKU! Read about Kate's volunteer journey: bit.ly/3JyVZPe
#California is one step closer to establishing a #RareDisease Advisory Council! Earlier this week, the bill to establish an #RDAC, introduced by @AsmRickZbur, passed out of committee, a major milestone. Learn more and take action to move the bill forward: bit.ly/3y4ysTG
The 2024 NORD #RareImpactAwards will honor the industry innovators behind recent groundbreaking #RareDisease treatments. One of those is @biogen, developers of the 1st FDA-approved treatment to slow disease progression of #FriedreichsAtaxia. Learn more: rareimpact.org
#WorldOrphanUSA: Heidi Ross, VP of policy and regulatory affairs at the National Organization for Rare Disorders (@RareDiseases), speaking at @OrphanConf. #RDAatWODC #OrphanDrugUSA
Today is #NationalDNADay, commemorating the completion of the Human Genome Project. Did you know 85% of #RareDiseases are genetic? That's why we need to understand our DNA. Watch this video on genetic testing for rare and undiagnosed disorders: youtube.com/watch?v=-w1ZpW… #DNADay
Ilona Williams recently joined @wearesrna for an "Ask the Expert: Community Spotlight" podcast episode to discuss her journey with #NMOSD. Listen to the episode here: siegelassociation.org/csiw. #NeuromyelitisOpticaSpectrumDisorder
Is your nonprofit or company joining us at NORD's 2024 #LivingRareForum in #LosAngeles this June? Register by Tuesday, April 30, to take advantage of early bird pricing for this #RareDisease patient and family event: livingrare.org Patients and caregivers RSVP for free.
We're speaking and exhibiting at this week's #WorldOrphanUSA Conference! Say hello and learn about the latest in #RareDisease advocacy, research, and care. 👋 Don't miss keynote discussions featuring NORD President, Peter L. Saltonstall & Executive Vice President, Pamela Gavin!
April is #NationalVolunteerMonth, and today we are sharing a story from Bill, one of our NORD #Running4Rare volunteer coaches! Read about Bill's journey and the joy he experienced within the #RareDisease and running communities: bit.ly/4446dk9
The Organic Acidemia Association congratulates two of our OAA parents who are being honored with a Rare Impact Award! @MonacoJana and Irfan Patel!
The Organic Acidemia Association congratulates two of our OAA parents who are being honored with a Rare Impact Award! @MonacoJana and Irfan Patel!
🌟 News from across the Atlantic! 🌟 We are pleased to share that EURORDIS’ Past CEO and Founder, Yann Le Cam, has been honoured with the @RareDiseases Lifetime Achievement Award for his commitment and leadership, continually pushing boundaries and advancing our mission.
Calling the mitochondrial disease community! Join clinicians, researchers, and families at #MitoMed2024, the @UMDF's Mitochondrial Medicine Conference 2024 in Cleveland, Ohio this June 26-29! Register at umdfconference.org
Announcing our 2024 NORD #RareImpactAwards Industry Innovators! These companies have developed groundbreaking FDA-approved #RareDisease therapies that brought hope to many in our community. Meet the Industry Innovators of 2024: rareimpact.org
PRISMS continues to lead the way in supporting people living with #SmithMagenisSyndrome with their upcoming 12th International Conference this July 11-14, 2024 in Dallas, TX. Check out @smsprisms for more info and register here: prisms.org/education/sms-…
We're thrilled to announce the 2024 NORD #RareImpactAwards Honorees! These stars have each made incredible advancements on behalf of the #RareDisease community, and we look forward to celebrating them this June in Los Angeles! Meet the Honorees: rareimpact.org
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Ethan Perlstein @eperlste
17K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, solo vc @AngelList, evo pharmacologist, mTOR worshipper, HODLer since '14, cofounder of Kai & Luca, bio/acc
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Genetic Counselors @GeneticCouns
15K Followers 641 Following National Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. RT does not equal endorsement.
FEDER | Enfermedades .. @FEDER_ONG
39K Followers 8K Following 👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 418 organizaciones de pacientes y a 1.546 patologías poco frecuentes
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Abby Turnwald (she/he.. @PedsGCAbby
925 Followers 1K Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
Luke Rosen @lukebrosen
2K Followers 432 Following Dad of 2 amazing kids. Founder of https://t.co/M8dxuYqmgL. Works with families affected by rare neurological diseases and cancer. Baseball and hockey. Firefighter.
The Journal of Inheri.. @JIMD_Editors
3K Followers 877 Following The JIMD is the official journal of the Society for the Study of Inborn Errors of Metabolism (SSIEM). Podcasts at https://t.co/QZggmJr9Of
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 6K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Devin Shuman (she/her.. @DevinShuman
3K Followers 5K Following A genetic counselor with #MitochondrialDisease. @SmithCollege Alum, #mitoGC #disabledGC #GeneChat #AbortionIsHealthcare #RareDisease opinions are my own🏳️🌈
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
David Fajgenbaum, MD @DavidFajgenbaum
11K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
elcartelmedellin @elcartelmedel
15 Followers 157 Following
Health lifestyle @Healthlifeeeee
0 Followers 30 Following
winnie @MichelleWo83774
0 Followers 73 Following
Kelly O’Neil Rodrig.. @KellyORodriguez
221 Followers 197 Following GI Psychologist @ChildrensPhila. Assistant Professor @PennMedicine. Tweets my own. she/her
julielee @julielee
44 Followers 197 Following Follower of Jesus Christ, Mother of Jake, Director of Hillside Little Kids Ministry
melinda hughie blaloc.. @Mmhblalock
22 Followers 538 Following mama • wife • advocate • fundraiser • medical mama • Epilepsy | ASD • thyroid cancer & 🫀 aneurysm survivor • INTERESTS: neuroscience, epilepsy 🧠 philanthropy
Linda Stotsky @EMRAnswers
23K Followers 9K Following Human & 🐾 Mom | #Marketing & #Brand Strategist | #PtAdvocate | #pharma contributor | #EHR #HIE Fixer | #pinksocks #WomeninHIT #BeKind #1stgen 🟦💕🎁Giver
Gyanu Adhikari @saatdobato
5K Followers 473 Following climate, gender and social inclusion, and other seriously fun stuff
İBG @ibgmerkezi
9 Followers 68 Following Izmir Biomedicine and Genome Center İzmir Biyotıp ve Genom Merkezi
Dra. Lola F. F. Burs�.. @dralolaffburson
366 Followers 360 Following Dra. Lola Fernández de la Fuente Bursón Reumatóloga clínica, investigadora y docente Sevilla - Huelva https://t.co/alD71RjJIN
Lauren Pierre @LaurenPier76256
0 Followers 5 Following
Lori Bouchard @bouchmamaof3
170 Followers 306 Following
minetamedica @DrSummerin1
141 Followers 764 Following
Elsie Megan @poemsandparents
13 Followers 222 Following My cathartic and honest (poetic) ramblings about the ups and downs of parenting a child with severe learning disabilities.
Ellen Moran @DrMoranLove
1K Followers 5K Following PhD Translational Rheumatology, Experienced Research Manager with interest in Scientific and Medical Comms https://t.co/zZidupKCGE
Goldenhar UK @GoldenharUK
216 Followers 379 Following Goldenhar Charity (UK) supports people of all ages throughout the UK who are affected by Goldenhar Syndrome and other craniofacial differences .
Aakritee Sinh @Aakriteesinh
308 Followers 355 Following culinary rock star, indefatigable entrepreneur, theatrical restaurateur, kitchen bitch ,killer mixologist, explorer of ingredients, conqueror of palates
HiTech Health @HealthHitech
133 Followers 390 Following Enabling healthcare companies to launch and supply products.
badtro @btis
62 Followers 671 Following
Sumac Imilla @sumacimilla87
136 Followers 983 Following
TurningPainIntoStreng.. @MichellesMemoir
253 Followers 460 Following Is pain a part of your life? Contact me! AUTHOR: Turning Pain Into Strength PODCASTER: https://t.co/Ns752TrvdI
Reza Maroofian @RMaroofian
413 Followers 770 Following Geneticist at UCL Queen Square Institute of Neurology @UCLIoN. Interested in Rare Diseases, Neurogenetics & Genomic Medicine.
Katriel @HagueKatriel
4 Followers 296 Following
Sharon Roberts @sharongo26
98 Followers 2K Following
༄✿Sana Queen♛�.. @SanaQueen_PTI
1K Followers 1K Following
stacey8892 @stacey88921
280 Followers 575 Following Mama- Cancer survivor - Currently teaching pre reg nurses @ QUB and loving it! Nurse for life! Interested in bleeding disorders, stroke care and education
Daniel Maley @MaleyDaniel
270 Followers 358 Following AI Systems Expert | Enhancing Healthcare through Prompt Engineering | Forest Hill labs Strategy Consultant | SUNY Brockport Alum | Google Trusted Tester
Gail Sadler @sadler_gail
15 Followers 29 Following
Robin 🇧🇧 @RobinT724
8K Followers 8K Following Caregiver, Book Lover, Passionate About Learning & Growing. “I don’t argue with people Harriet Tubman would have shot”. #Good Trouble
mhammoh mohy @MohyM23926
131 Followers 4K Following
علي الحريشي @ofqC1uJ5b07JJKJ
17 Followers 280 Following الثقه بالله هي : ان تفقد اغلى ما تملكك وتبتسم وتقول : قدر الله و ما شاء فعل/
🇺🇦 LJ C #🟦 #.. @linnyc2000
2K Followers 2K Following "In a time of universal deceit - telling the truth is a revolutionary act." George Orwell
Linda Koch @LinkoNRG
1K Followers 775 Following Chief Editor of @NatureRevGenet. 🇫🇷🇩🇪🇬🇧, ❤️ mostly 🇵🇹. Mouse genetics and metabolism roots. Opinions my own, not my employer’s. She/Her.
Nifty Profit @NiftyProfit
160 Followers 1K Following Macro Economics | Tech | Web 3 | Crypto Trader | Tokenomics Expert | Stoic
Nathalie Vanden Eynde @VEyndeNathalie
9 Followers 138 Following
SHIB ARMY @ShibaArmy2020
102K Followers 37K Following Crypto currency trading and business expert . #DM for Promotion. $memes token #BSC #BSCgem #ERCgem #MetaVerse #NFT promoter #BSC #DYOR
Helen Chen, PhD @helenc327
361 Followers 626 Following iPSC scientist & organoid engineer for rare neurodevelopmental disease, working on disease modelling & precision medicine @StJudeResearch, @ubc alumnus🇨🇦
Nature Reviews Geneti.. @NatureRevGenet
92K Followers 225 Following Publishing reviews and commentaries across the fields of genetics and genomics. Part of @SpringerNature and @NaturePortfolio. Tweets are from the editors.
DrCruxlee @Drcrodz
323 Followers 3K Following Pediatric Surgeon. De Corazón Azul y Oro. clasemediero, aspiraciónal, cuenta personal NO profesional
vhygdh @vhygdh
3 Followers 2K Following
FormusPro @FormusPro
73 Followers 338 Following OotB and bespoke business focused software solutions such as: #MicrosoftDynamics365, #CRM and #ERP, #Azure, #PowerPlatform #ClickDimensions and much, much more.
Sequoyah @sequoyah1999
56 Followers 146 Following
🇸🇦 @edukusa
68 Followers 452 Following Ph.D. researcher in Bioinformatics, clinical bioinformatics @OfficialUoM , Genetics🧬, Rare Diseases , HPC, OMICS , @NHS, @GenomicsEngland .
Marla Rosen @MarlaVaUs
19 Followers 199 Following
Medical Pediatric med.. @MPSIC_SA
3 Followers 14 Following
Hospital Professional.. @HospitalProNews
2K Followers 4K Following Ireland's Dedicated Hospital Professional Publication | Hosts of Hospital Professional Awards
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Ethan Perlstein @eperlste
17K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, solo vc @AngelList, evo pharmacologist, mTOR worshipper, HODLer since '14, cofounder of Kai & Luca, bio/acc
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Genetic Counselors @GeneticCouns
15K Followers 641 Following National Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. RT does not equal endorsement.
FEDER | Enfermedades .. @FEDER_ONG
39K Followers 8K Following 👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 418 organizaciones de pacientes y a 1.546 patologías poco frecuentes
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Luke Rosen @lukebrosen
2K Followers 432 Following Dad of 2 amazing kids. Founder of https://t.co/M8dxuYqmgL. Works with families affected by rare neurological diseases and cancer. Baseball and hockey. Firefighter.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Dr. Tracy Dixon-Salaz.. @TracyDixonSalaz
3K Followers 975 Following Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
NCATS @ncats_nih_gov
16K Followers 702 Following Official account of @NIH's National Center for Advancing Translational Sciences. Privacy Policy: https://t.co/f5qzfKqqaR engagement ≠ endorsement
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
Alnylam Pharmaceutica.. @Alnylam
17K Followers 637 Following Leader in #RNAiTherapeutics, having pioneered this innovative approach to silencing the genes that cause disease. Community guidelines: https://t.co/AgfAVlmSG2.
Neena Nizar @NeenaNizar
2K Followers 2K Following Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own
PA Rare Disease Advis.. @PARareDisease
786 Followers 638 Following To improve the quality of life for all those affected by rare diseases in Pennsylvania.
Dr. Robert M. Califf @DrCaliff_FDA
11K Followers 43 Following Husband, father, grandfather. Doctor with heart(s). Commissioner of Food and Drugs - @US_FDA
C.S. Mott Children's @MottChildren
8K Followers 1K Following C.S. Mott Children’s Hospital is one of the nation’s best children’s hospitals. Part of @umichmedicine.
Raymond A. Wood Found.. @rawoodfound
261 Followers 578 Following Providing quality of life support for hypothalamic-pituitary brain tumor survivors 🧠 #braintumor #craniopharyngioma
interACT @interACT_adv
10K Followers 1K Following We see a world where intersex people make their own choices about their bodies. Policy & media org. ✉️ Inquiries: [email protected] 📸➡️ @ interact_adv
Brittany Clayborne, M.. @drbrittanyspeak
213 Followers 297 Following Heart transplant & Cancer Survivor. Psychologist. TEDx Speaker. Always seeking to Do Something Amazing by inspiring people to live their Maverick.
Float Like a Buttahfl.. @buttahflyk
1K Followers 1K Following Writer & Patient Advocate 🦋 arthritis | chronic illness | disability | invisible illness | rare disease | sarcoidosis Creator, Kaleidoscope RareDisease Stories
NR2F1 Foundation @Nr2f1Foundation
68 Followers 87 Following Empowering families and individuals living with rare #NR2F1 mutations through education, awareness and research.
KBG Foundation @KBGFdn
604 Followers 530 Following The KBG Foundation is a 501(c)(3) nonprofit, dedicated to providing support, assisting in research and advocating to raise awareness about KBG Syndrome.
United Porphyrias Ass.. @UnitedPorphAssc
154 Followers 298 Following The Future of Porphyria...Raising Awareness, Research and Therapies
HemoSoCal @HemoSoCal
223 Followers 113 Following
Stiff Person Syndrome.. @TheSPSRF
387 Followers 159 Following Finding a cure for Stiff Person Syndrome through RArE: Research, Awareness, and Education. #sps #TheSPSRF
KdVS Foundation @KdVSFoundation
222 Followers 268 Following Koolen-de Vries Syndrome (KdVS) Foundation is a non-profit organization promoting awareness and raising funds for this genetic syndrome.
RareDiseaseDiversityC.. @rarediseasediv1
162 Followers 45 Following
Chad Rudnick, MD @Peds_doc
1K Followers 1K Following Pediatrician. Writer. Co-Founder, CEO of Boca VIPediatrics. Children's Book Author. Affiliate Assistant Professor - FAU COM.
DoctorJohn 🚑 @DoctorJohn_MD
8K Followers 372 Following ER doctor | ❤️@sarah_fong_tho | gamer | Opinions=mine, not employer | art by kagugle | Mod for @strippin I'd say I stream sometimes but that's a lie now
Sayed Tabatabai, MD @TheRealDoctorT
73K Followers 3K Following Physician. Writer. My debut book “These Vital Signs” @HarperCollins is now available in stores and online. Owner of @iggythepetrock
Behind the Mystery @btmcaresforrare
236 Followers 83 Following Join us to #RedefineRare on #BehindTheMystery. Shining a light on the emotional and medical perspectives of #RareDiseases. Airing on @lifetimetv.
Olivia Mozzi (she/her.. @OliviaMozzi
488 Followers 2K Following Disability rights speaker | Leadership team: @indianapolis_cm | Actor
Rebecca Rohrer @rebecca_rohrer
561 Followers 3K Following Mng Cons turned Doctor. Ex National Medical Director’s Clinical Fellow. Happy runner and health tech geek. Triplet mum. Finding a new normal after breast ca.
Octavia Nichole @OctaviaNichole
453 Followers 618 Following Self esteem & health advocate, animal lover. Love affair with music Author of the Book Overcome the impossible, VoiceOver actor
Dr. Alexis S Mobley, .. @AlexisSMobley
2K Followers 1K Following Doctor of Neuroinflammation: microglia and ILCs 🧠🐭 | President and co-founder @BlackInImmuno | [email protected] | 👩👧 | ♿️🏳️🌈🎾🎮📚
ITSAN @ITSANnonprofit
580 Followers 381 Following Raising Awareness of Topical Steroid Withdrawal Syndrome #redskinsyndrome #topicalsteroidaddiction #topicalsteroidwithdrawal #eczema #atopicdermatitis #tsw
Claudia Marcela Ramir.. @h_clamarrapre
143 Followers 962 Following 🇨🇴 MD, Epidemiologist. MSc Infectious Diseases, MSc. Clinical Trials. LSHTM. Director, Global Clinical Development GlaxoSmithKline “Tweets are my own”
Lisa Melton @DrLisa_Melton
606 Followers 535 Following Head of Research, Sanfilippo Children's Foundation. Fan of science and collaboration. Views my own.
Gabriel Morin @morin_gbrl
74 Followers 181 Following Nephrologist, PhD candidate (Cell Biology). Translational medicine in genetic mosaic disorders. Studying molecular mechanisms to find cures for rare diseases.
Matthew Ellinwood, CS.. @MPSSocietyCSO
38 Followers 102 Following Science, Research, Advocacy, and Policy in Service of the Rare Disease, Lysosomal Storage Disease, and the Mucopolysaccharidosis and Mucolipidosis Communities
Nitin gupta @doxycyclinitin
954 Followers 2K Following MD, DM, DTM&H Infectious disease physician Interested in tropical medicine, fungal infections and HIV
John Novack @J2Novack
4K Followers 3K Following Former health journalist currently working to improve healthcare by making connections for good. https://t.co/c47urmBuIN #pinksocks
Goodpods @GoodpodsHQ
100K Followers 110K Following The global community of podcast lovers. The “Goodreads for podcasts.” Follow friends to discover and share podcasts. https://t.co/V01JhhLu1z
17q12 Foundation @17q12Foundation
54 Followers 12 Following Creating a community for those affected by 17q12 syndromes while raising awareness and encouraging research. 
Project Sunshine @ProjectSunshine
3K Followers 2K Following We deliver the healing power of play to children with medical needs through trained and dedicated volunteers.
Pericarditis Alliance @PericarditisA
211 Followers 51 Following Dedicated to the management and treatment of pericardial disease through research, education, and support for patients and healthcare providers.
Dan Dry Dock Shockley @DryShockley
638 Followers 5K Following Retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran. I'm an 11 year hereditary colon cancer syndrome, attenuated FAP, WARRIOR.
Wings of Hope @wingsofhope_ngo
783 Followers 328 Following Wings of Hope changes and saves lives through the power of aviation.
CS Foundation 💛 @CS_Foundation1
84 Followers 32 Following The Chondrosarcoma Foundation was created to improve the lives of people living with this rare bone cancer. In loving memory of Shayna E. Kramer.
Superior Mesenteric A.. @smasyndromeorg
229 Followers 356 Following We are here to support those with SMAS by providing monetary grants for medical care, to raise awareness about SMAS, & to promote research.
The Rare Disease Comp.. @RareCoalition
469 Followers 351 Following We are a coalition of life science companies committed to discovering, developing & delivering rare disease treatments for the patients we serve. #OneRareVoice
Hope for Hasti @brannigan001
2K Followers 390 Following Living in hope of gene therapy treatment for Cornelia de Lange Syndrome #CdLS 🧬 Walked 700 miles barefoot and won a Pride of Britain award #hopeforhasti
American Telemed @AmericanTelemed
18K Followers 3K Following As the only organization completely focused on advancing telehealth, the ATA is working to change the way the world thinks about healthcare.
❤️ Jameela Jamil .. @jameelajamil
1.0M Followers 395 Following Podcast link below! Instagram: Jameelajamil. TikTok: Jameelajamil
Project Sleep @project_sleep
7K Followers 3K Following Let's make sleep cool! We are a 501(c)(3) non-profit opening hearts and minds to #sleep health & sleep and circadian conditions. President & CEO: @REMRunner
PFICNETWORK @pficnetwork
77 Followers 20 Following PFIC advocacy and resource network Inc. Improving the lives of patients and families worldwide affected by progressive familiar intrahepatic cholestasis.
Red Grammer @redgrammer
448 Followers 10 Following Critically acclaimed and GRAMMY® nominated recording artist Red Grammer has set the gold standard for writing and performing contemporary children’s music.
Jeff @TheFantasyEng
17K Followers 1K Following I really like watching football | dad to 3 awesome kids, 1 w special needs
UC San Diego Health @UCSDHealth
23K Followers 737 Following We're ranked the #1 hospital system in San Diego by U.S. News & World Report and have an expanding network of primary care doctors and top-ranked specialists.The reviews are in! Here's what one reader had to say. Have YOU gotten your copy of Kaleidoscope #RareDisease Stories? Please review on Amazon or Goodreads. Not yet? Order yours on Amazon sites worldwide. Proceeds donated to @RareDiseases. ~🦋 #KaleidoscopeRare #ZebraStrong🦓
A major challenge that drug developers face in the development of rare cancer medicines is the accessibility of biomarker testing. Jim Palma of @targetcancer emphasizes that education is key not just for patients but also providers. #WorldOrphanUSA
The reviews are in! Here's what one reader had to say. Have YOU gotten your copy of Kaleidoscope #RareDisease Stories? Please review on Amazon or Goodreads. Not yet? Order yours on Amazon sites worldwide. Proceeds donated to @RareDiseases. ~🦋 #KaleidoscopeRare #ZebraStrong🦓
Our panelists discuss challenges and opportunities for continued innovation, and how policymakers can support their efforts to develop life-changing new treatments for #rarediseases. #neinnovates
@RareDiseases @yann_eurordis Our new CEO @VirginieBF31 noted: “Yann’s work has been pivotal in shaping our community. His advocacy has contributed to transforming the lives of countless families, fostering the development of a new ecosystem where diagnosis & treatments are more accessible. Congratulations!”
The Organic Acidemia Association congratulates two of our OAA parents who are being honored with a Rare Impact Award! @MonacoJana and Irfan Patel!
We're thrilled to announce the 2024 NORD #RareImpactAwards Honorees! These stars have each made incredible advancements on behalf of the #RareDisease community, and we look forward to celebrating them this June in Los Angeles! Meet the Honorees: rareimpact.org
Truly honored to be chosen as a recipient of this year’s 2024 NORD #RareImpactAward
We're thrilled to announce the 2024 NORD #RareImpactAwards Honorees! These stars have each made incredible advancements on behalf of the #RareDisease community, and we look forward to celebrating them this June in Los Angeles! Meet the Honorees: rareimpact.org
🌟 News from across the Atlantic! 🌟 We are pleased to share that EURORDIS’ Past CEO and Founder, Yann Le Cam, has been honoured with the @RareDiseases Lifetime Achievement Award for his commitment and leadership, continually pushing boundaries and advancing our mission.
Thank you to @RareDiseases for recognizing SpringWorks for developing the first approved therapy for adults with #DesmoidTumors. We look forward to celebrating the advances being made on behalf of patients with #RareDiseases at the #RareImpactAwards in L.A. this June.
Thank you @LLSAdvocacy, @MDA_Advocacy, @RareDiseases, @NMDP_advocacy, @MMom64, and @ChrisRamir52149 for joining us today to talk about the importance of enacting Accelerating Kids Access to Care Act! #AKAC
Rare Disease Day at NIH 2024 may have passed, but our commitment to the community continues! Read an @NIHRecord story about the inspiring journeys of #RareDiseases patients & caregivers, scientific discoveries, impactful community programs & more: go.nih.gov/GWW2ee1 #RDDNIH
Have YOU gotten your copy of Kaleidoscope #RareDisease Stories? Please share your thoughts here or in a review. Not yet? Order yours on Amazon (US: a.co/d/1qhe4Je). Proceeds donated to @RareDiseases ~🦋 #KaleidoscopeRare #PatientStories #ZebraStrong 3/3
Attention CA Advocates - submit letter by Apr 17! California needs a Rare Disease Advisory Council. Join @RareDiseases in supporting AB2613 to give voice to Californians living with a rare disease. Submit a letter by 4/17 through the portal at: bit.ly/49q9hIg
Check out this workshop from @RareDiseases on the first day of #ASGCT2024!
We're co-hosting a half-day panel on #RareDisease Clinical Trials at the @ASGCTherapy 27th Annual Meeting in Baltimore on May 7! Free for nonprofit employees, patients, caregivers, and NORD Members. Register to attend in-person or virtually by April 11: bit.ly/3IwCA13
Hey #MSLeg, @RareDiseases and 22 Patient Organizations issued a letter in support today! See who signed on --> rarediseases.org/wp-content/upl…
The #MSLeg passed bills to create a RDAC in Mississippi! Take Action today to ensure your Council prioritizes the voice of individuals with lived experience and those uniquely positioned in our healthcare system --> rarediseases.org/driving-policy…
What an amazing experience to be given the opportunity to share my journey with Addison’s disease and pituitary tumor. I was unable to find much information about these two rare diseases before diagnosis and hope to change that. This is a wonderfully written book by @buttahflyk.
Here's Dana with her copy of Kaleidoscope #RareDisease Stories. She's got 2 features in the book, focused on her journey with #AddisonsDisease and #CorticotrophAdenoma. a.co/d/1qhe4Je. *Net proceeds donated to NORD ~🦋🦓 #KaleidoscopeRare #ZebraStrong
Today, GAAPP’s Head of Education, Kristen Willard, joined forces with Jill Pollander from @RareDiseases at the Patient Assistance & Access Programs conference in Philly! 🌟 They shared insights on boosting patient outcomes through effective communication. #HealthCommunication
The NORD State Report Card: Each State Graded on Rare Disease Care Access. See where your state landed here: bit.ly/49YIcNB @RareDiseases #raredisease #rarediseaseawareness
Officially registered for @RareDiseases Forum in June. See yall soon!
I will be speaking at @RareDiseases Patient & Family Forum this June on a breakout session entitled "Sexual & Reproductive Health Issues in Rare Disease"! Will you be in attendance? #RareDisease #NORD #ReproductiveHealth #GeneticCarriers #RememberTheGirls
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