We are in regular contact with families to give regular updates on the advice from the Lead Clinicians and multidisciplinary teams from the Alström Adults and Children’s clinics.
Remember we are here for you. Just a phone call or email away. You can call us or we can call you.
Links to the Government guidance can be found HERE
We have brought together a range of resources, from support services, guidance and how to stay entertained, follow this link to find out more http://www.alstrom.org.uk/family-support/
Stay safe and well.
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
World Alström Syndrome Day is HERE!!
3rd May 2022 Today is the first World Alström Syndrome Day!! Celebrating Carl Henry Alström who was born on the 3rd May & discovered the Syndrome. Let’s learn more about this ultra-rare condition… Make a difference today & complete the Global AS Patient Registry so we can find further treatments and manage this complex condition effectively.
AS Global Webinar ‘How I Manage My Diabetes’
Bringing the AS Global Community Together How I Manage My Diabetes Come and join us to hear from Lexi, who will be speaking about how she manages her Diabetes, the devices she has found most useful and her top tips to stay healthy. Join together with the global community and share your top tips too!
On the hunt for a Treasurer!
Trustee Treasurer Vacancy Alström Syndrome is an ultra-rare genetic syndrome that affects less than 1 in 500,000. Alström Syndrome UK (ASUK) is a patient led organisation that supports those living with the condition, their families and those working with them. Alström syndrome is a complex and life limiting condition, it causes multiple issues; visual loss,
Winter Newsletter out now!!
Grab something hot and toasty and take 5 minutes to read our latest news… Read a the highlights from the AS Global Conference, how we kept youngsters entertained with a virtual teddy bears picnic and we introduce our newest online advocacy group, the Culture Sparkle Sisters!! Download a PDF copy HERE or a plain text
Join us for our AGM!
Our next Annual General Meeting is to be a virtual event to go through the charities updates and achievements over the last year. Why not join us to see what we have been up to and you can also ask us your questions about our work and future developments. As always we would love to
Exciting News… New CEO!!
Alström Syndrome UK announces new Chief Executive Officer It is with great pleasure that we announce the appointment of our new Chief Executive Officer, Kerry Leeson-Beevers. Many of you will know Kerry as a passionate advocate for those affected by Alström Syndrome, not only being Mum to Kion and Cole, but helping to develop the charity
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 very
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
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 thatOn the hunt for a Treasurer!
Trustee Treasurer Vacancy Alström Syndrome is an ultra-rare genetic syndrome that affects less than 1 in 500,000. Alström Syndrome UK (ASUK) is a patient led organisation that supports those living with the condition, their families and those working with them. Alström syndrome is a complex and life limiting condition, it causes multiple issues; visual loss,National Genomics Board
A new Genomic Medicine Service is in the process of being established to provide a more consistent and equitable genetic testing service to people living throughout England. Its Board brings together senior decision makers across the sector, including key civil servants, delivery partners, patient advocates and representatives from research organisations and industry. The purpose of the BoardQAC 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.
EURORDIS: access to medicines for all
EURORDIS has published their position on early access to medicines in Europe; arguing for compassionate use to become a reality so patients in urgent need get the help and treatments needed. Currently many medicines take far too long to develop which for many rare and complex conditions these medical interventions are needed now. A compassionateIn case you missed our Annual General Meeting…
Our Annual General Meeting took place on the 24th January 2019. This year we decided to do this by webinar/tele-conference to be as accessible as possible to allow as many people to have the opportunity to attend, particularly as we are all spread out throughout the UK. In case you missed this years AGM, we
GAAD – Go Mouseless!!
16th May 2019 Today marks the eighth Global Accessibility Awareness Day #GAAD. The day aims to get everyone talking, thinking and learning about how to make digital technology accessible and inclusive for all people affected by different disabilities. Having accessible technology on our websites, mobile phones and web services such as Twitter and Facebook is
Easy Fundraising – whilst you shop!
Did you know that you can support Alström Syndrome UK by shopping online? Every time you shop online via easyfundraising at one of the 3,300 retailers including John Lewis, Aviva, Sainsbury’s and Booking.com, a donation will be made to Alström Syndrome UK, and it won’t cost you a penny extra. It’s really simple to getWhat 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
Summer newsletter out now!
Well at last summer is finally here!! Grab something refreshing to drink and take 5 minutes to read these uplifting family stories in our latest summer newsletter. Please download your PDF version HERE or alternatively, a plain text version is HERE Please get in touch with Catherine Lewis if you would like an article to be