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
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 charityJoin our team!
We are on the hunt for a Alström Syndrome Care Coordinator Do you relish the challenge of making a positive impact on people’s lives supporting individuals with a rare condition and those who love and care for them? If you do, then come and join our award-winning charity, Alström Syndrome UK (ASUK) which provides
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
What does the new lock-down mean for you?
New Year, brings another new lockdown! As I am sure you are all aware, the Government has introduced new national restrictions which means that from 5th January 2021, we must all stay at home and avoid meeting people we do not live with, except for specific purposes. I am sure once again you all have your own worries, concerns and questions about what this
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 compassionateQAC 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.
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 youA 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 theASSAI 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 UKNational 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 Board
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
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/
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
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 importantQAC 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.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