Report from Medics4RareDiseases is out now!
Survey across 79 #RareDiseases - Identifying 7 red flags and clinical clues to people with undiagnosed #RareConditions
Let's get it out there and share far and wide!
Find out more in the article below 👇👇
m4rd.org/2024/05/21/stu…

Join us online on 23rd May 1.00pm for Alström Chats
Bringing parents and carers of those affected by #AlströmSyndrome in the UK together to support one another and have a good old natter.
Follow the link to find out more and how to book your place today
alstrom.org.uk/alstrom-chats/

It's #NationalWalkingMonth
Discover the #MagicOfWalking and feel the health benefits of a 20-minute walk or wheel – it’s also a great way to boost your mood.
Living Streets have put together #Try20
20 top tips to fit in 20 mins of walking into your day.
livingstreets.org.uk/get-involved/n…

This week is #MentalHealthWeek remember mental health is just as important as your physical health.
Did you know ASUK have started a wellbeing service?
Check out the ASUK website to find out more.
Mind YoungMinds Rareminds Alström Angels
alstrom.org.uk/wellbeing-team…

Marvellous medicine!
Pioneering gene therapy helps this child to hear again!
Deafblind UK Deaf Action Hearing Dogs for Deaf People
NHS NHS England
bbc.co.uk/news/health-68…

Today is World #AlströmSyndrome Day!

Celebrate the Birthday of Carl Henry Alström who first discovered the Syndrome.
Why not donate to one of the rarest conditions in the world, and help support families with this complex condition.

justgiving.com/alstromsyndrom…

Plans for Thursday? Join us 2nd May 7:00pm (UK time) to hear from Pietro Maffei from Alstrom Italy about Advancements, Knowledge and Experience in this annual lecture.
Marina will also be giving schooling top tips.
Alström Angels Alstrom Syndrome Int
us02web.zoom.us/meeting/regist…

Today is #UndiagnosedChildrensDay
SWAN UK (syndromes without a name) are a dedicated support network in the UK for families affected by a syndrome without a name – a genetic condition  so rare it often remains undiagnosed
Genetic Alliance UK
Check out how you can get involved
geneticalliance.org.uk/support-and-in…

It is nearly World Alström Syndrome Day, 3rd May 2024!
and AS Global Director Ann's last day 😭
Join us on 2nd May from 7:00pm (UK time) to hear about Alström: Advancements, Knowledge and Experience in this eagerly anticipated annual lecture.
us02web.zoom.us/meeting/regist…

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…