Laura Sedita-Alaimo and Tabby Khan, MD MPH discussed how the team at Novo Nordisk is using #MapLab to inform their Medical Affairs strategy, improve field execution, measure impact, and improve outcomes for patients with #rarediseases . #KomodoSummit
My Name is Dermot Devlin and I have MPS Morquio.
#MPSDay 2024 #WearItBlue #MPSDay #MPSawarenessday #RareDisease #Disabled #Disability #Dwarf
Happy Birthday to all of our NGLY1 May birthdays! Everyone born in this month are like blooming flowers, their beauty and grace is a delight to behold. #NGLY1 #RareDisease #Birthdays
One workout. One cause. One community. One lift to make a difference for the #RareDisease community! Northwestern Football is teaming up with Uplifting Athletes for their Lift for Life on May 23! Pledge your support at: [charity.pledgeit.org/f/WpWAnei9Gm?c… ]
![One workout. One cause. One community. One lift to make a difference for the #RareDisease community! @NUFBFamily is teaming up with @UpliftingAth for their Lift for Life on May 23! Pledge your support at: [charity.pledgeit.org/f/WpWAnei9Gm?c… ]](https://pbs.twimg.com/media/GNlmQMyWwAAT0nW.jpg "Jack Olsen (@j_olsen82) on Twitter photo 2024-05-15 02:47:45 One workout. One cause. One community. One lift to make a difference for the #RareDisease community! @NUFBFamily is teaming up with @UpliftingAth for their Lift for Life on May 23! Pledge your support at: [charity.pledgeit.org/f/WpWAnei9Gm?c… ]")
Join us for an empowering webinar led by our compassionate Patient Support Services Manager & licensed social worker, Lauren King, and featuring insightful guest panelists! Learn more & register today: bit.ly/MSAMayWebinar
#MSA #multiplesystematrophy #raredisease #webinar
I'm clearly biased, but my highlight of day 1 #mosmed24 symposium is to see our #raredisease drug discovery projects elegantly showcased by the superb MoSMed CDT PhD students Charlie Edleston, Asma Feriel Khoualdi, @rhiannaYNG
Excited to help co-create a #MentallyHealthy toolkit for #RareDiseases ✨ Great to see such amazing things like this come out of #ECRD2024 🤝
May is #vasculitis #awareness month.
On day 15 we celebrate the International Vasculitis Awareness Day
Vasculitis is a rare chronic autoimmune rheumatic disease and I live with it.
#VisualiseVasculitis #RareDisease
Vasculitis UK - In memory of John Mills MBE 💙💚 VIA VIA Jane L Edwards 📚
Looking forward to two days of learning & partnership in Brussels at #ECRD2024 - great to see so many #raredisease stakeholders gathered together by EURORDIS-Rare Diseases Europe
Sun is shining in beautiful Brussels! Looking forward to tomorrows #ECRD2024 to catch up with #RareDisease colleagues and learn about the recent #RareDisease research advances and progress! EURORDIS-Rare Diseases Europe
Katika kuendelea kupata maarifa ya Magonjwa adimu na kuwaelimisha wengine..April 24 nlishiriki #Raredisease symposium iliyokua na theme ya 'Bridging gaps in Rare Disease care'tulipata kusikia insights kutoka Tanzania na Netherlands 🇳🇱...
IQVIA Biotech offers comprehensive support across all therapeutic areas, from #rarediseases to cell and gene therapies. Our accessible resources include unparalleled data, analytics, and technology, streamlining processes for biotechs of any size.
bit.ly/3WIXXEz
Great to be back in #Brussels for #ECRD2024 (with a little helper this time😂 💓)..Avril Daly 💚 & new EURORDIS-Rare Diseases Europe CEO Virginie Bros-Facer emphasise the importance of this conference for shaping policy for #raredisease
🎉 We are thrilled to welcome Asociación FOXP1 España to #Share4Rare ! Joining forces is essential to support patients and families affected by #rarediseases
📣 Calling all patient organisations to join us on this journey too! Together we can make a difference ✍️ share4rare.org/join_as_patien…
Thank you all for coming together for a fantastic #ProDGNEmeeting2024 in Cagliari and online!
📸Dive into some great pictures and moments from the event and stay tuned for more updates!
#GNEMyopathy #RareDisease EJP RD - European Joint Programme on Rare Diseases #JTC2020
UPA’s own Kristen Wheeden at the FDA’s Foundation for FDA today to discuss the importance of patient registries and natural history studies for #raredisease .
These essential initiatives can help us better understand and treat rare conditions like #porphyria
Thank you to former German President & First Lady, Horst & Eva Luise Köhler, for inviting our CEO Michael Hund to keynote their Eva Luise and Horst Köhler Foundation for People with Rare Diseases #RareDisease Symposium in Berlin. It was a phenomenal 2 days of 'Rethinking Rare'.
Our aim with the pocket knowledge series is to increase awareness surrounding rare diseases. In this particular installment, we focus on MPS III (Sanfilippo), a rare autosomal recessive condition. #MPSAwarenessWeek #rarediseases #research
