Krabbe UK

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Krabbe UK

Krabbe UK

@KrabbeUk

Krabbe UK are a UK charity who support babies, children and adults who suffer from Krabbe Disease. Charity Nos. Eng & Wales 1174472 Scotland SC047927

United Kingdom เข้าร่วม Şubat 2018
297 กำลังติดตาม173 ผู้ติดตาม
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Hélène Le Borgne
Hélène Le Borgne@HeleneLBorgne·
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'
HaDEA@EU_HaDEA

Less than a month left to apply for the #HorizonEU calls in #HealthResearch! Topics for a competitive EU #HealthIndustry include: -New #HealthTechnology uptake -Electronic health record for #EHDS -Medicines regulatory needs 📌Deadline: 13/04 hadea.ec.europa.eu/calls-proposal…

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Hannah Scott
Hannah Scott@HannahM_Scott20·
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
CYP Research in Palliative Care@CYP_CSI

We are holding workshops at the end of March/beginning of April with #parents, #carers & #HSCP to find out how we can best #implement C-POS in paediatric palliative care #pedpec. If you are interested: contact with @HannahM_Scott20 at hannah.2.scott@kcl.ac.uk for more information

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Rare Disease UK
Rare Disease UK@rarediseaseuk·
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
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Rare Disease Day
Rare Disease Day@rarediseaseday·
🎉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: cutt.ly/sMJWQYz
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Rare Disease Day
Rare Disease Day@rarediseaseday·
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!
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Rare Disease Day
Rare Disease Day@rarediseaseday·
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?👇👇👇
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Colin Brown
Colin Brown@PropertyColin·
#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
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Hunter's Hope
Hunter's Hope@HuntersHopeFDN·
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: youtu.be/BBW5jbnH8eI
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MetabERN
MetabERN@Metab_ERN·
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: iciem2021.com.au
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Hunter's Hope
Hunter's Hope@HuntersHopeFDN·
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
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ERDERA
ERDERA@ERDERA_org·
📢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: ejprarediseases.org/event/resource… #RareDisease
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ค้นพบ

@GeneticAll_UK @rarediseaseuk @SpringerClinMed @JIMD_Editors @Metab_ERN @SJDbarcelona_es @Passage_Bio @musclewarrior