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
Ramadan at home
WHAT IS RAMADAN? In 2020, Ramadan will be from around the 23rd/24th April for 29/30 days. It is the holiest month of the year for Muslims as it is when the Qur’an was revealed to the Prophet Muhammad (PBUH). During the month of Ramadan, Muslims around the world will fast, meaning they won’t eat or
Cuppa and Catch up
Thank you to everyone who joined us for a cuppa and catch up on the 23rd April 2020. It was lovely to see so many families joining together virtually from across the globe and sharing their top tips on how they are keeping entertained whilst at home. Let’s get together for our next cuppa and catch up
Healthy Mind, Healthy Body
Life in Isolation Keeping your mind and body healthy Do you want to share your top tips for how you are keeping healthy indoors or do you have questions and queries about how to actually do this? Well, Alstrom Syndrome UK will be running their next virtual get together for families to look at how to keep
Hammer Down!
Hammer Down Hassan When you are thinking of staying at home for many weeks, it can be a daunting prospect but why not check out this uplifting film. Let’s look for ways we can keep ourselves active and healthy. Share your ideas with us and we will bring together ideas and information to keep us
We are here for you
The Corona Virus epidemic and how we can support you and your family. I’m sure you, like us all, are anxious for yourself and your family at this unprecedented time. I wanted to share with you what we are doing and what we can do to support you and your family through these worrying andActive 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
Be a Rare Champion!
Can you remember when we gathered together on our bikes to ride from Torquay to Birmingham, an amazing 200 miles to raise money and awareness of Alstrom Syndrome or when Nichola Martland along with her friends and family persuaded her friend to be waxed!! Eeekkk!! We rely on your continued generosity and support to continueRamadan at home
WHAT IS RAMADAN? In 2020, Ramadan will be from around the 23rd/24th April for 29/30 days. It is the holiest month of the year for Muslims as it is when the Qur’an was revealed to the Prophet Muhammad (PBUH). During the month of Ramadan, Muslims around the world will fast, meaning they won’t eat orA huge THANK YOU to Children in Need!
A huge THANK YOU to Children in Need! ASUK are committed to improving services for our young people and their families. In 2015, we were lucky enough to receive 3 years funding from Children in Need to provide support to young people to support them through transition from clinics at Birmingham Children’s Hospital to the
Hot off the press!! – the Winter newsletter is out NOW!
With the cold and wintery nights setting in why not grab something warm and comforting and take 5 minutes to read our latest newsletter. This edition is full to the brim with family stories and adventures – including a Game of Thrones adventure in Ireland and one of our members relaxing in the Highlands. YouCardiomyopathy 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
News, Views and Useful Links, September edition, out now!
Welcome to your September edition, of News, Views and Useful Links. In this edition we have a full round up for you, including Amy jetting off to the Game of Thrones film sets in Ireland and discover how you can have your own adventure! and BE QUICK TO GET THIS DEAL ASUK conference is happeningFundraising for ASUK!
A HUGE thank you to David Lunt who will be taking part in the London Marathon on 22nd April to help raise funds for a number of charities one of which is Alström Syndrome UK! We will let you know later this month how he gets on! Good luck David! Please visit our donation pageASUK Annual Review Summary
The ASUK Annual Review Summary is now published! This summary captures our activities from the last financial year. We hope you agree that this gives a snapshot of how we have provided support as well as the daily achievements of many families and people living with Alström. Click below for access: ASUK Annual Review 2017-2018
GAAD – Go Mouseless!!
16th May 2019 Today marks the eighth Global Accessibility Awareness Day #GAAD. The day aims to get everyone talking, thinking and learning about how to make digital technology accessible and inclusive for all people affected by different disabilities. Having accessible technology on our websites, mobile phones and web services such as Twitter and Facebook is
Rare Disease Day 2020
On the last day of February every year the rare disease community comes together to raise awareness of rare diseases and their impact. This year is particularly special as Rare Disease Day falls on a leap year so it is even more rare falling on the 29th February 2020. The key message this year is that:
Accessible Travel Lounge Opens!
Rail passengers using Birmingham New Street Station can now use a new assisted travel lounge which opened on the 10th June 2019. The lounge was provided by Network Rail as part of their ‘Railway Upgrade Plan’ and was designed with the guidance of Birmingham New Street’s accessibility forum, which includes people with disabilities, their carers