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
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,
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
Invitation to the ASUK Annual General Meeting
You are invited! Alström Syndrome UK are pleased to announce our Annual General Meeting will take place on Saturday 2nd November 2019 from 2:00 – 3:00 pm 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
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.
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
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
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/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,
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
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 promoteASSAI 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
Bowled over by this donation!
A HUGE THANK YOU to Wickersley Cricket Club! Members of Wickersley Old Village Cricket Club kindly donated £1,700 to Alström Syndrome UK following a successful summer fundraising event. 16 year old Kion, who is affected by Alström Syndrome and whose family are members of the club gratefully accepted the donation. The funding will go towards a fun-filled activityWow! – 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 promoteBreaking 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 inQAC Sight Village – July 2018
The ASUK team attended the QAC Sight Village event in Birmingham in July. This was a very worthwhile and informative event for people who are visually impaired, for professionals and for organisations wishing to improve their services for the visually impaired. More information on the QAC upcoming events can be found on their website: http://www.qac.ac.uk/exhibitions.htm.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/Fundraising 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 page