Rare disease researchers might be particularly interested in these 2 topics: 'Modelling and simulation to address regulatory needs in the development of orphan and paediatric medicines' & 'Mapping the hurdles for the clinical applications of Advanced Therapy Medicinal Products'
We are looking for #parents & #carers (including #siblings) of #children with life-limiting and life-threatening conditions & #ppc#HSCP to take part in workshops to find out how best to implement a new tool to find out what is important to children with #llltc and their families
It's #RareDiseaseDay!
Today is all about raising awareness and generating change for the 300 million people worldwide living with a rare condition, their families and carers.
Keep an eye out on our feeds throughout the day – @GeneticAll_UK@rarediseaseuk#CareForRare
🎉100 days until #RareDiseaseDay 2023 and the launch of the global community-driven movement that raises awareness and generates change for the 300 million people living with a rare disease!
🖥️ Watch and share the official Rare Disease Day 2023 video NOW: https://t.co/ZTJZOQNbXx
🧰 The @EJPRareDiseases Innovation Management Toolbox (IMT), a library of translational medicine resources on #RareDiseases, is now available.
🛠Use the IMT now: https://t.co/oURUC0hpqI
▶️Watch the video tutorial: https://t.co/CQDX3sDv01
The 7th edition of the standard textbook for professionals involved in the diagnosis and management of Inborn Metabolic Diseases will be published soon @SpringerClinMed A not to miss book! @JIMD_Editors@Metab_ERN@SJDbarcelona_es
Get ready to join the Global Chain of Lights! 💙💚💜
As it turns to 7 PM across the globe in every timezone, join us as we watch the world #LightUpForRare 🌎
Remember to use #LightUpForRare to be featured on our social media posts!
Welcome to #RareDiseaseDay, Europe! 🎉
There are over 300 million people who live with a rare disease in Europe.
With events taking place all over the continent, there's plenty to get involved in today!
How are you getting involved in #RareDiseaseDay in Europe?👇👇👇
#RareDiseaseDay2022 a day to remember that whilst individual diseases such as #Krabbe are very rare there are so many rare diseases impacting 3.5 million people in the UK @KrabbeUk
Families with #Leukodystrophies deserve the help of a loving and supportive community, but it can be overwhelming to ask for help.
If you know someone with #Leukodystrophy, we encourage you to learn more about their journey through this powerful video: https://t.co/mbWt1N5y2t
Don’t miss the 14th #ICIEM2021 congress starting this Sunday 21/11!
Experts from all over the world gathered to share knowledge on metabolic #RareDiseases.
➡️ Register here: https://t.co/mI3lDaO1Xy
📣 We are excited to announce that our newly redesigned website is online!📽️
Read the press release https://t.co/WNNGzXlSKj and visit the different sections to discover all the new features! https://t.co/VdGuDisQ0c
#ERNeu#RareDiseases#MetabERN
@camraredisease's #RAREsummit21 takes place on 7 October 2021. The event is a chance to share knowledge, make connections and exchange ideas on addressing the challenges faced by people affected by rare diseases. Find out more here: https://t.co/ljbz7posIT
#RareDisease#event
To commemorate International Leukodystrophy Day, the Fundación Lautaro te Necesita located in Argentina, launched a "#LightUpBlue" initiative to show support to families living with Leukodystrophy & raise awareness.
Thank you!
#huntershope#leukodystrophy#lightupblue
Join 40+ speakers at the Digital Health Europe Summit
Register for free to join these inspiring debates on the future of #digitalhealth and care.
https://t.co/26wu30FmJW
28-30 September 2021
#DHESummit
📢Registration is now open for the @EJPRareDiseases Resource Webinar dedicated to European Paediatric Translational Research Infrastructure (#eptri)!
📆Date: 14 october
💶Fees: Free!
📍Location: Online
ℹ️Learning objectives & more information: https://t.co/4HOLkQr6ZG
#RareDisease