mldsupport_uk

Can you help us understand the experiences of those with a Lysosomal Storage Disorder (LSD) in the UK? If you are 16 years or over, please complete a short survey to help clinical centres & patient organisations going forward. To take part, follow: buff.ly/3x8uLfi

Part 4 of “A Rare Find”, The Newborn Screening Collaborative’s comedy short about a young struggling couple as they contend with the thrills, spills, and exhaustion which often accompanies life with a newborn baby. #newborn #newbornscreening #MLD #RareDisease #NHS

Why does the UK only screen babies for 9 rare conditions? This is part three of ‘A Rare Find’, which aims to open a conversation on the subject of #newbornscreening with the broader public. #MLD #raredisease #Leukodytrophy

Created on behalf of The Newborn Screening Collaborative, this is part two of ‘A Rare Find’, John Lee Taggart’s film hoping to amplify empathy and advocacy for families affected by rare diseases. #MLD #newbornscreening #raredisease #Leukodytrophy

Filmmaker John Lee Taggart hopes to create progress on #newbornscreening with a new comedy short, “A Rare Find”, which features narration from Peep Show’s Robert Webb. The film follows a young couple as they contend with the thrills a new baby. #raredisease #leukodystrophy

MLD Support Association UK is once again arranging for festive parcels packed with treats and goodies to be distributed to MLD families. If you would like to register your family, complete a registration form by following this link: tinyurl.com/2m9z7ecn #MLD #Leukodystrophy

Screening newborns for inherited metabolic disease began in the UK in the 50s with the 'nappy test' for phenylketonuria. We now fall behind our European neighbours in new tests for newborn screening. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBSCollab #NBS

Screening newborns for inherited metabolic disease began in the UK in the 50s with the 'nappy test' for phenylketonuria.

 We now fall behind our European neighbours in new tests for newborn screening. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBSCollab #NBS

HAPPY RARE DISEASE DAY!! 😍🩺🦓 Do you have your stripes at the ready?! 🌈🌈Today we are asking you to #showyourstripes for #rarediseaseday ALL DAY to raise awareness for those living with rare conditions! Remember to tag us @M4RareDiseases!!

Let’s work together to ensure those affected by rare disease in the UK are diagnosed early. This ensures symptoms can be managed effectively even if there is no cure available for the condition. 
#CareForRare #RareMatters #NewbornScreeningCollaborative #NBSCollab #NBS

An estimated 3.5M people live with a rare disease in the UK. Let’s ensure more lives are changed through newborn screening by working towards a future in which more rare conditions are added to the newborn screen. #CareForRare #RareMatters #NewbornScreeningCollaborative #NBS

The Newborn Screening Collaborative, a collection of 13 rare disease organisations including MLD Support Association UK, have highlighted 3 main priorities for 2023. Find out more bit.ly/3k0Rkwh #careforrare #rarematters #newbornscreeningcollaborative #nbscollab #nbs

We are pleased to announce some of the topics that will be presented at our MLD Scientific and Family Conference on 24-25 March 2023 at the Holiday Inn Telford. To register for the Conference follow this link bit.ly/3IuCnN4 #leukodystrophy #raredisease #GeneticDiseases

We work to support families and provide up-to-date online information on MLD. We organise Conferences, Fun days and campaign for Newborn Screening. We need experienced, computer-literate volunteers to help us. Contact: vivienne@mldsupportuk.org.uk #volunteering #Charity #MLD

We are absolutely delighted to announce that Atidarsagene autotemcel (Libmeldy©) has been recommended as an option for treating metachromatic leukodystrophy MLD. Read the Press Release bit.ly/3opCsGJ @ArchangelTrust @MPSSocietyUK

Great News! We will be holding a virtual Xmas Party on 11th Dec for MLD children and siblings. We’ll also be distributing Festive Family packages in the lead up to Xmas to UK MLD families. If you would like to register your family, please follow the link. bit.ly/3BwvBz3

Zoom Meeting for all families dealing with MLD on Friday 10th July. mldsupportuk.org.uk/2020/07/02/zoo… #MLD #zoom #raredisease

Family Fun Day 7 September 2019 Thank you National Lottery Community Fund for your generous grant for our Family Fun Day. See here: bit.ly/2Wr1XXr #nationallottery

Metachromatic Leukodystrophy (MLD) is a devastating genetic, neuro-degenerative condition. Please support @JeansforGenes #mld on Friday