We are in regular contact with families to give regular updates on the advice from the Lead Clinicians and multidisciplinary teams from the Alström Adults and Children’s clinics.
Remember we are here for you. Just a phone call or email away. You can call us or we can call you.
Links to the Government guidance can be found HERE
We have brought together a range of resources, from support services, guidance and how to stay entertained, follow this link to find out more http://www.alstrom.org.uk/family-support/
Stay safe and well.
Alström Syndrome UK offer:
- Support for families and individuals affected
- Caring and Supportive Community
- Promotion of Innovative Research
- Medical Screening Clinics where patients can receive the most up to date information to manage their condition
- Alström Syndrome Medical Handbook
- Family and Professional Conference
- Opportunities to have Fun and be part of our exciting projects!
It is important to remember, AS symptoms may develop at different stages and not everyone is affected by all of the symptoms. Even amongst siblings the symptoms can vary.
Alström Syndrome UK has three key aims:
- To support people who are affected by Alström Syndrome including their carers and the professionals who are working with them
- To raise awareness amongst both the public and medical professions of Alström Syndrome
- To raise funds to promote research into Alström Syndrome
Emergency Numbers
The Queen Elizabeth Hospital, Birmingham and Birmingham Children’s Hospital offers AS multi-disciplinary clinics and AS specialists. In an emergency your first point of contact should always be to call 999. If you need to speak to a medical expert in Alström Syndrome please contact ASUK and we will put you in touch with the correct specialist. If you would like to speak to the AS Clinical Lead please contact either:
- Dr Tarek Hiwot (adult services), Queen Elizabeth Hospital, Birmingham: 07979 127826 or alternatively via the QEH switchboard: 0121 627 2000
- Prof Tim Barrett (children’s services), Birmingham Children’s Hospital: 0121 333 9999
Summer newsletter out now!
Well at last summer is finally here!! Grab something refreshing to drink and take 5 minutes to read these uplifting family stories in our latest summer newsletter. Please download your PDF version HERE or alternatively, a plain text version is HERE Please get in touch with Catherine Lewis if you would like an article to be
What does the new lock-down mean for you?
New Year, brings another new lockdown! As I am sure you are all aware, the Government has introduced new national restrictions which means that from 5th January 2021, we must all stay at home and avoid meeting people we do not live with, except for specific purposes. I am sure once again you all have your own worries, concerns and questions about what this
Hot off the press…Winter Newsletter, out now!
As the weather is beginning to get crisp and cold, grab something warm and take 5 minutes to read our latest newsletter. Filled with lots of stories of what the Alstrom Community has been up to and how ASUK has been supporting families through these difficult times. Find out how you can register for the
Time to Talk – Organ Donation
To coincide with Organ Donation Week from the 7th – 13th September 2020, we would like to shine a spotlight on Organ Donation – looking at the right information to help you make the right choices for you and your family. Sifting through the myths and getting to the facts of the matter. The NHS
Hot off the press… Summer newsletter out now!
As the weather is hotting up, pop your feet up, grab something chilled and take 5 minutes to read our latest newsletter. Check out Melissa cooking up a storm in the kitchen and read how equipment is making a real difference in our families lives. You can download your pdf copy HERE or as a word
Big Eid – Celebrations!
Time to celebrate! On Friday 31st July Muslims around the world will be celebrating Eid Ul-Adha, the second of the annual Eid festivals, referred to as ‘Big Eid.’ This festival occurs directly after the month of Hajj in the Islamic Calendar. Hajj is the great Pilgrimage every Muslim must attend once in their lifetime, it
News, Views and Useful Links… May 2019 edition OUT NOW!
Welcome to your May edition, of News, Views and Useful Links. In this May edition we have a full round up for you, including Ann and Alex jetting off to the Alstrom Syndrome International conference in the USA! and HOT OFF THE PRESS ASUK are hosting a family event later this year, full of
Hot off the Press! – Summer Newsletter Out NOW!
As the weather is hotting up, grab something chilled and take 5 minutes to read our latest newsletter. Filled with lots of stories from our members including travels to Barbados and America and how Birmingham Bobbies made dreams come true… Find out how you can get involved in planning your Family Event on theCardiomyopathy UK Information Day
Cardiomyopathy is one of the conditions that some people with Alström Syndrome are diagnosed with. In view of this our National Development Manager Kerry Leeson Beevers went along to the Cardiomyopathy UK Information day earlier this year to understand more about dilated and restrictive cardiomyopathy and to learn about new developments in research, medication
EURORDIS: access to medicines for all
EURORDIS has published their position on early access to medicines in Europe; arguing for compassionate use to become a reality so patients in urgent need get the help and treatments needed. Currently many medicines take far too long to develop which for many rare and complex conditions these medical interventions are needed now. A compassionateSummer newsletter out now!
Well at last summer is finally here!! Grab something refreshing to drink and take 5 minutes to read these uplifting family stories in our latest summer newsletter. Please download your PDF version HERE or alternatively, a plain text version is HERE Please get in touch with Catherine Lewis if you would like an article to be
Make a Difference, Vote Today!
In the world of rare diseases, awareness no matter how big or small makes a HUGE difference. Rare Disease UK held the 1st Rare Film Festival to raise awareness of Rare Diseases on the 10th February 2020. Over 50 films were submitted to take part in the event and the film ‘Living with Alstrom Syndrome’ was chosen asBig Eid – Celebrations!
Time to celebrate! On Friday 31st July Muslims around the world will be celebrating Eid Ul-Adha, the second of the annual Eid festivals, referred to as ‘Big Eid.’ This festival occurs directly after the month of Hajj in the Islamic Calendar. Hajj is the great Pilgrimage every Muslim must attend once in their lifetime, it
My Guide Dog and Me…
Have you ever wondered what having a guide dog is really like, how are you assessed and what training is involved? Meet Kion and Curtis, they have both passed their guide dog assessment and are now on the waiting list to have their first guide dog… Following their assessment, they were both invited to Shireview Guide
News, Views and Useful Links…April 2019 edition
Welcome to your April edition of News, View and Useful Links. In this edition we have included information about lots of fun activities. Whether your ideal trip is a theatre trip to see an audio described version of Les Miserables, sailing the high seas or a fun family day – there is something for everyone.Cardiomyopathy UK Information Day
Cardiomyopathy is one of the conditions that some people with Alström Syndrome are diagnosed with. In view of this our National Development Manager Kerry Leeson Beevers went along to the Cardiomyopathy UK Information day earlier this year to understand more about dilated and restrictive cardiomyopathy and to learn about new developments in research, medication
Active Lifestyle Winner!
Active Bradford is a partnership of organisations committed to making Bradford a healthier and more prosperous place to live and work. Each year Active Bradford host an awards ceremony where they recognise those people and organisations who go above and beyond in their local area to help other people get active or through their own