One of our #RareImpactAwards Industry Innovators is Ipsen, developers of the 1st treatment approved to reduce extra-skeletal bone formation in people with #FibrodysplasiaOssificansProgressiva ( #FOP ).
Meet all the 2024 Honorees: rareimpact.org
मानेखाललं शरीर निकामी पण प्रिती पटवा आदर्श शिक्षिका कशा झाल्या?
#teacher #musculardystrophy #rarediseases CMO Maharashtra
🌎>7,000 rare diseases
⚕️>300m people living with a #raredisease
💊 Due to low prevalence, diagnosis can be difficult & treatments are often unavailable/inadequate
🎯 Urgent need for scientific research to find solutions & provide support to patients
eurordis.org/information-su…
This is very important for #raredisease #drugrepurposing please DM for further details.
Might take me a day or so to respond - big grant submitted today so out on the razz 🍻 and, oh yes, I might be having a birthday soon - 21 again 🤣
The 'Rare Minds Matter - Mental Health Survey 2023' report explores the post-pandemic mental health experiences of the UK's rare community, shedding light on an often overlooked aspect of living with a rare condition
To read: rareminds.org/wp-content/upl…
#raredisease
4-Hydroxybenzoic acid rescues multisystemic disease and perinatal lethality in a mouse model of #mitochondrial #raredisease
Cell Reports Universidad Granada
cell.com/cell-reports/f…
ASGCT is proud to partner with Pfizer Inc. on a new competitive grant opportunity supporting independent medical education on #genetherapies and gene-modified therapies for #rarediseases ! Apply through July 1: bit.ly/4dIWTXs.
Happy birthday Lu!
6 years - and now standing by yourself!
I have too many feelings to tweet, so I'll just say THANK YOU to everyone who has supported Lucy, or who is fighting to improve the lives of those with #raredisease . Keep going.
Great talk yesterday from Harriet PCDresearch at #DMMPreclinical yesterday on #raredisease perspectives models as parent of a child with #PrimaryCiliaryDyskinesia , as clinical drug development insider & trained paeds onc researcher- #GetCiliaMoving MRC NMGN Congenital Anomalies
May - Day 9 #vasculitis awareness month
Takayasu Arteritis is a rare type of Large Vessel Vasculitis #raredisease
Sarah’s Story 📖
#VasculitisUK ‘s campaign to support #patient s #research - justgiving.com/campaign/visua…
#patient #PatientStories #raredisease #visualisingvasculitis
What is Hypermobile EDS (hEDS)?
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#EDS #HSD #HCTD #RareDiseases #chronicpain #TheILCFoundation #PrioritizePain #helpothers #nonprofit #joinnow #hypermobility #hypermobility syndrome #ehlersdanlossyndrome #comorbidities #dysautonomia #ehlersdanlosawareness #integrativemedicine
Avui es celebra a l’Hospital Universitari Bellvitge | HUB el III Fòrum Català de Malalties Minoritàries, el Dr. Antoni Riera ha parlat, com a coordinador del grup de MM de l’HUB, dels objectius del grup, les fites aconseguides i els reptes en MM. #orgullbellvitge #hospitalenxarxa #raredisease
Early Career research forum in #rarediseases is underway Queen's University Belfast 🎓 University College Dublin UCD Research IrishResearchCouncil
Congratulations Claire Hill for winning the best 10 minutes presentation award at the #RAiN #ECR forum Queen's University Belfast 🎓 #raredisease research University College Dublin UCD Research Dr Suja Somanadhan Prof AJ McKnight
Despite the substantial impact #RareDisease can have on individuals and their
families, they often remain obscure. Lack
of awareness increases the burden on
patients to equip themselves with
knowledge ........
Help us #ElevateCareForRare
#IAmNumber17
iamnumber17.org.uk
