Krabbe UK

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

[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'

[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

[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

[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: https://t.co/ZTJZOQNbXx

[ERDERA @ERDERA_org]

🧰 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

[Dra A. García-Cazorla @AGarciaCazorla]

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

[Krabbe UK @KrabbeUk]

https://t.co/WsYvjNEig7

[Colin Brown @PropertyColin]

Encouraging news from @Passage_Bio on their #GeneTherapy for #KrabbeDisease @KrabbeUk

[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!

[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?👇👇👇

[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

[Genetic Alliance UK @GeneticAll_UK]

Get ready for #RareDiseaseDay2022 by #FollowFriday our members @musclewarrior @MikeMattersDMD @MeBOResearch @mibdct @lhonsociety @KrabbeUk @IIHUK @ISG_Charity @HMSACharity @UKHSPGroup
#FF #RareDiseaseDay

[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: https://t.co/mbWt1N5y2t

[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: https://t.co/mI3lDaO1Xy

[MetabERN @Metab_ERN]

📣 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

[Genetic Alliance UK @GeneticAll_UK]

@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

[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

[DigitalHealthEurope @DHE_2020]

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

[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: https://t.co/4HOLkQr6ZG
#RareDisease

[MetabERN @Metab_ERN]

Nominations close tomorrow! Nominate your rare disease hero. #EURORDISAwards2022