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
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
Join us for ‘Life After Lockdown Webinar’
Life After Lockdown Webinar Thursday 30th July 2020 What do the new guidelines mean for me? On Thursday 30th July 2020 we will be hosting a webinar to discuss the latest guidance around shielding and face coverings and what this means for you. Please find below the joining instructions to join us on Thursday
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
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
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 governance
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 as
News, Views and Useful Links (February edition)
News, Views and Useful Links! Reaching for the Sky! One of our members Simmie who is always looking for a new challenge, shares her thoughts on her new love for trampolining, proving it is what you can do that counts. “I have recently started going to a trampoline park which opened in Birmingham not long
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
Coronavirus Guidance
There is also specific advice for Scotland, Wales and Northern Ireland, so please ensure you relate our guidance to your own area too: If you live in Wales, the government’s advice on shielding can be found here: https://gov.wales/guidance-shielding-and-protecting-people-defined-medical-grounds-extremely-vulnerable-coronavirus-0 If you live in Scotland, the government’s advice on shielding can be found here: https://www.gov.scot/publications/covid-shielding/ If youDisabled 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
Safe and Savvy Online
As part of Safer Internet Day 2020, the charity Look UK have teamed up with the not-for-profit company Wise Kids to provide a free webinar for youngsters with a visual impairment and their parents, about keeping safe online. This will be happening on the 11th February 2020 at 8pm. If you would like to registerConnect 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
We’ve joined the Rare Revolution!
We are proud to announce that we are now a Charity Partner and an integral part of the Rare Revolution magazine, helping to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. We hope this will raise awareness of Alstrom Syndrome alongside other rare conditions and willA 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