Hope for all those impacted by #RareDiseases
LifeArc £40m rare disease research centres get the go ahead!
We are delighted to be involved in making sure patient and public involvement and engagement is embedded throughout the centre.
Timothy Barrett
alstrom.org.uk/rare-disease-c…

Fantastic collaborative efforts, pleased to be involved in making sure patient and public involvement and engagement is embedded throughout the centre.
Thank you to LifeArc and everyone involved in the development of these new research centres.
lifearc.org/2024/lifearc-l…

We are delighted to be involved in making sure patient and public involvement and engagement is embedded throughout the centre.
Thank you to LifeArc and everyone involved in the development of these new research centres.
Giving hope for all those affected by #RareDisease

Please take a minute to nominate Alström Syndrome UK.
Every penny really does make a difference to those affected by this ultra-rare, complex condition.
Go on... it only take a minutes and could make a HUGE difference!
Please share far and wide
health.movementforgood.com/#nominateAChar…

Marvellous Medicine in action... through the Living Kidney Sharing Scheme run by NHS Blood+Transplant
Health Equity in Transplantation Coalition NHS BBC News (UK)
bbc.co.uk/news/health-68…

A HUGE WELL DONE to everyone who completed TCS London Marathon
The ballot is now open until 26th April 2024 to try and secure your place for next year...
If you get a spot why not run for us, and support people with one of the rarest conditions in the world.
tcslondonmarathon.com/enter/how-to-e…

If you have ever wondered about completing the Alström Syndrome Global Patient Registry - then check out this short film from Sanford Research explaining why it is so important for the rare community.

alstrom.org.uk/patient-regist…

#AlstromSyndrome annual lecture on 2nd May 2024 to mark World AS Day.
Join us... reflecting on what we have learned, the challenges ahead and top tips to support your child and young person at school/college.
Register now
us02web.zoom.us/meeting/regist…

Our CEO, Kerry Leeson-Beevers is attending the Orphan Drugs & Rare Disease Global Congress in London. ParadigmGlobalEvents
Her plenary session is about the importance of patient networks & incorporating diverse patients voices in diagnosis & clinical trial research
orphandrugscongress.com

It is LIVE!! - booking has opened for the #AlstromSyndrome Family and Professional Conference 2024!
As you can tell, we are SUPER EXCITED to bring the AS community together again, after such a long time since Covid brought the world to a standstill.
alstrom.org.uk/book-now-as-co…

How will you do in the British Heart Foundations Easter Quiz? British Heart Foundation
Do you know which foods would be healthier to have over Easter - I didn't do too well, how will you do?
Cardiomyopathy UK HeartHealth World Heart Federation Heart Research UK HEART UK
bhf.org.uk/informationsup…

Delighted to hear from Kath Bainbridge from Department of Health and Social Care about the Rare Diseases Action Plan at the Rare Disease Research UK 1st Annual Conference today in #Newcastle
The importance of the Patient Voice.
Genetic Alliance UK NIHR Research Medical Research Council
rd-research.org.uk/about-us/confe…

Our CEO Kerry Leeson-Beevers is delighted to be attending Rare Disease Research UK 1st Annual Conference today in #Newcastle and chairing their PPIE Good practice – perspectives from contributors and researchers session.
Genetic Alliance UK NIHR Research Medical Research Council
rd-research.org.uk/about-us/confe…

Well... what a night at the Smiley Charity Film Awards Charity Film Awards so many amazing stories to be told...
Our T-KASH film unfortunately didn't win... but what an achievement to have our work recognised in this way.
Why not check out these vital resources
breaking-down-barriers.org.uk/t-kash-transit…

Must see film...
For Global World Down Syndrome Day, this short film has been realised and in short it is AMAZNG!!!
'Assume I can. So maybe I will.'
CoorDown DSUK Down syndrome UK Down Syndrome IRL

youtu.be/9HpLhxMFJR8?si…

All about the Alström heart - series is out now!
In these 6 episodes, AS Global Director Ann Chivers and AS Expert Cardiologist, Prof. Richard Steeds talks all about the heart.
#AlstromSyndrome
Alstrom Syndrome Int Alström Angels British Heart Foundation Cardiomyopathy UK
alstrom.org.uk/as-global/#All…

The clock is ticking
You only have until tomorrow night to vote for the Let's Get it Right for Young People T-KASH film in the Charity Film Awards Smiley Charity Film Awards - the Oscars of the charity world!
PLEASE VOTE FOR US NOW!
Sense RNIB Guide Dogs
smileycharityfilmawards.com/films/lets-get…

AS Global Conference Films and Graphics are out NOW!

We hope you all enjoyed the AS Global Conference in January as much as we did. Don't worry if you missed any of the sessions, as you can now find them all on the website.

#AlstromSyndrome

alstrom.org.uk/as-global/#ASG…

Tess will be greatly missed by everyone whose life she touched, her determination to support others and her beaming smile will be greatly missed by all.

It is with great sadness that we announce Tess Harris ((in need of another kidney sadly)) Tess Harris CEO PKD Charity UK & Secretary Ciliopathy Alliance has peacefully passed away.
On behalf of everyone at ASUK and Breaking Down Barriers we would like to give our sincere condolences to all who knew Tess, she will be greatly missed.