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
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
Join us for the AGM
Alström Syndrome UK are pleased to announce our Annual General Meeting will take place on Wednesday 18th November 2020 from 7:00-8:00pm via teleconference. The Board of Trustees and Chief Executive will all be in attendance. At the AGM we will celebrate the achievements of the organisation and family members over the last year. We will present
Registration is now open!
Alstrom Syndrome Global Conference 4th and 5th December 2020 In true 2020 style – Let’s bring the Alstrom global community together for the first ever, virtual Family and Professional Conference. We will tour the world, with insights from AS experts and inspiring personal presentations from families. There will also be plenty of time to network
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
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
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
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.National Conversation on Rare Diseases Survey
Do you want to help inform the rare disease framework as part of the UK Strategy for rare diseases in 2020? If you are a patient, healthcare professional or industry member, you can take part in the ‘National Conversation’ now! The Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood,Thank you Wickersley Cricket Club!
Alström Syndrome UK would like to extend our thanks to Wickersley Cricket Club! Yet again members of the club have very kindly donated £1,916.66 to Alström Syndrome UK following a successful fundraising event. 17 year old Kion (pictured left), who is affected by Alström Syndrome accepted the donation earlier this month. We are all veryASSAI Family Day Padua – 13th October 2018
ASUK were kindly invited by Pietro Maffei, the president of ASSAI (Association of Alström Italy) to their family day on 13th October 2018. This was a wonderful event that we feel very grateful to have been part of. It was an excellent opportunity to share some of the knowledge we have developed in the UK
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
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 BlueJoin us for the AGM
Alström Syndrome UK are pleased to announce our Annual General Meeting will take place on Wednesday 18th November 2020 from 7:00-8:00pm via teleconference. The Board of Trustees and Chief Executive will all be in attendance. At the AGM we will celebrate the achievements of the organisation and family members over the last year. We will present
What a day and night!
Thank you to everyone who joined the Alstrom Community on the 19th October 2019 for the Alstrom Syndrome UK Past, Present and Future conference in Birmingham. Whilst the families and professionals gathered at the conference, the youngsters had a fun-filled day at Drayton Manor Theme Park. The conference brought families together to map their diagnostic
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 happening
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 the