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
Join us for the Covid-19 Shielding webinar
Shielding Webinar 1st July 2020 What does the new guidance mean for me? On Wednesday 1st July 2020 we will be hosting a webinar with our lead clinicians from the Alström clinics Dr Tarek Hiwot and Prof. Tim Barrett to answer your questions about the latest shielding guidance and what it means for you. Please find
Connect together for the Healthy Hearts webinar
Join us and connect together Healthy Hearts Webinar Dr Rick Steeds, Cardiac Consultant from the Alstrom specialist team will be joining us on Thursday 11th June 2020 at 14:00 pm to discuss his top tips for a healthy heart. This will include guidance around coronavirus and ways we can try and stay healthy. As always there will be
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
Around the World with Alstrom #AlstromGlobal
Jetting off to the Alstrom Syndrome International Conference in the USA! ASUK Trustee, Alex Griffiths-Rayson and Chief Executive, Ann Chivers set-off on the 30th April 2019 to attend the Alstrom Syndrome International conference in Texas, USA. The event was spread over 5 days from the 2nd – 6th May 2019 and included family and professional
Travelling Blind; Where will your adventure take you?
On 7th March 2019 BBC Two aired a travelling show with a difference, Travelling Blind. This featured Amar Latif, founder of Travel Eyes and comedian Sara Pascoe as they embark on an adventure across Turkey. This is a truly beautifully filmed programme, which takes you on the adventure with them. Reminding us, to use
Disabled Blue Badge Rules are Changing
Biggest overhaul to the Blue Badge Scheme Did you know that the Blue Badge scheme is to undergo the biggest changes since the 1970s? From April 2019, the scheme will be expanded to include people with what is often described as ‘hidden disabilities’, such as mental health issues or autism. Automatic entitlement to the Blue
Watch LIVE – Rare Disease Event at United Nations
A Rare Disease Day policy event will take place at the United Nations on the 21st February 2019, 14:45 pm (GMT). Over 30 speakers from around the world, including ambassadors and officials from the Permanent Missions to the UN of Brazil, Estonia, Japan, Kuwait, Thailand, and the United Arab Emirates, will discuss how to advance
What are European Reference Networks?
European Reference Networks are a virtual network of specialists and healthcare providers across Europe who aim to share knowledge and information they hold about rare complex conditions. The hope is that this concentration of knowledge and information will improve the management and treatments for rare complex conditions. European Reference Networks (ERN) create a clear governanceA 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
Mental Health Awareness Week 2019
Hosted by the Mental Health Foundation, Mental Health Awareness Week takes place from 13-19 May 2019. The theme this year is Body Image – how we think and feel about our bodies. Body image issues can affect all of us at any age. During the week the Mental Health Foundation are publishing new research and campaigning
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. You
Breaking down Barriers website launched
Breaking down Barriers, website has launched! Developing supportive and inclusive services for individuals and families affected by genetic conditions. Have a look at the new website to find out more about this project and the fantastic work being achieved. http://breaking-down-barriers.org.uk/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, medicationASUK 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
Research opportunity – have your voice heard
COordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how services are currently coordinated for rare conditions and how they should be coordinated in the future. The study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with Genetic Alliance UK and others.