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
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:
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
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 register
Northern Powerhouse, Sheffield Makes People Happy!
The Ticket Bank is for charities and community organisations that want to improve access to the arts, music events and cultural activities for their members who experience barriers to attending these events. Ticket Bank believe that all events should be accessible and socially inclusive and they provide free tickets to such events. They hope that
Groove to the Alstrom Stroove – Sneak Peek!
This film is a must see – bringing together clinicians, families and the ASUK team to Groove to the Alstrom Stroove! Alström Syndrome UK are always looking for fun and innovative ways to stay fit and healthy. Alström can often lead to obesity and type 2 diabetes so leading a healthy lifestyle is very important
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
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 asBreaking Down Barriers Workshop September 2018
Under the leadership of Kerry Leeson Beevers we recently joined up with other patient organisations and support groups to workshop how we can collaboratively support inclusive services for all those affected by genetic conditions. This workshop is one of the many activities we have designed to share knowledge about the inequalities experienced by families inRare 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:
News, Views and Useful Links… March 2019 edition
In this latest edition, read how one of our members literally ‘Reached for the Skies’ and how you can make your own adventure a reality… Also, what did we get up to on Rare Disease Day, great fun was had by all! Click here to view our latest e-newsletter.Global Genes Summit 2018
ASUK along with 800 other rare disease organisations, patients and advocates attended the Global Genes Summit in California between 3-4th September this year. Global Genes was founded in 2008 with the goal of helping families affected by rare disease connect with tools, resources, and much needed support, helping eliminate the challenges of rare disease. The
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
Happy Rare Disease Day 2019!
Rare Disease Day falls on the last day of February – this year it will be on the 28th February 2019. This will be the twelfth international Rare Disease Day coordinated by EURORDIS. On this day patient organisations all over the world will hold awareness-raising activities. The theme for Rare Disease Day 2019 is ‘BridgingASUK 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 2017-2018News, 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
Wow! – Listen to Inspirational Kion on BBC Radio 2
Listen to inspirational Kion (pictured below) who featured on BBC Radio 2’s Chris Evans morning show, on Monday 13th November 2017. Follow the link below to the recording, if you move the iplayer to 2 hours 1 min you can hear from Kion speaking about having Alstrom Syndrome and the work of Alstrom Syndrome UK to promote
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
Awareness Animation is Launched!
ASUK is very excited to launch our Alström Syndrome ‘Living with a Rare Disease’ animation to raise awareness and understanding about this rare disease. Let’s all raise awareness and share this animation with friends, family, relevant organisations and professionals to spread the word about this ultra rare condition. Click on the image below to watch