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
Joined February 2018
- Tweets250
- Following296
- Followers173
- Likes356
Krabbe UK retweeted
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'
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-pro…
Krabbe UK retweeted
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
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 [email protected] for more information
Krabbe UK retweeted
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
ALT Today is Rare Disease Day
Krabbe UK retweeted
🎉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
Krabbe UK retweeted
🧰 The @EJPRareDiseases Innovation Management Toolbox (IMT), a library of translational medicine resources on #RareDiseases, is now available.
🛠Use the IMT now: imt.ejprarediseases.org/
▶️Watch the video tutorial: youtube.com/watch?v=H92b6WEW…
Krabbe UK retweeted
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 retweeted
- Preclinical studies w/ @PennGTP demonstrate biologic effects of vector-optimized #GeneTherapy PBKR03 for #KrabbeDisease
- PBKR03 showed marked improvements in safety, disease progression & key biomarkers in LG & SM animal models
- $PASG is enrolling cohort 1 in #GALaxC trial
Krabbe UK retweeted
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!
Krabbe UK retweeted
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?👇👇👇
Krabbe UK retweeted
#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
Krabbe UK retweeted
Get ready for #RareDiseaseDay2022 by #FollowFriday our members @musclewarrior @MikeMattersDMD @MeBOResearch @mibdct @lhonsociety @KrabbeUk @IIHUK @ISG_Charity @HMSACharity @UKHSPGroup
#FF #RareDiseaseDay
Krabbe UK retweeted
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
Krabbe UK retweeted
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/
Krabbe UK retweeted
📣 We are excited to announce that our newly redesigned website is online!📽️
Read the press release metab.ern-net.eu/the-redesig… and visit the different sections to discover all the new features! metab.ern-net.eu/
#ERNeu #RareDiseases #MetabERN
Krabbe UK retweeted
@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: ow.ly/Dgsz50G6jO3
#RareDisease #event
Krabbe UK retweeted
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
Krabbe UK retweeted
Join 40+ speakers at the Digital Health Europe Summit
Register for free to join these inspiring debates on the future of #digitalhealth and care.
bit.ly/DigitalHealthEuropeSu…
28-30 September 2021
#DHESummit
Krabbe UK retweeted
📢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/re…
#RareDisease
Krabbe UK retweeted
Nominations close tomorrow! Nominate your rare disease hero. #EURORDISAwards2022
Who’s your hero?
Nominate that organisation, company or person whose remarkable efforts for the rare disease community have impressed you! Let’s give them a big thank you together! #EURORDISAwards2022
Nominations close on September 10th!
👉 blackpearl.eurordis.org/nomi…
