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
Join our team!
We are on the hunt for two Alström Syndrome Care Coordinators… Do you relish the challenge of making a positive impact on people’s lives supporting individuals with a rare disease 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
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
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
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 governanceGlobal 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
Have your say…
Have your say… As you know the world has changed as we know it, with everything now becoming virtual and that has included our multidisciplinary clinics too… In June 2020, NHS England facilitated a consultation to learn more about patients experience of telemedicine clinics, 3 AS patients contributed to the telephone consultation and as youNational 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,ASSAI 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 UKA 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 the
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 importantGlobal 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. TheNational 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 BoardCardiomyopathy UK Information Day
Cardiomyopathy is one of the conditions that some people with Alström Syndrome are diagnosed with. In view of this our National Development Manager Kerry Leeson Beevers went along to the Cardiomyopathy UK Information day earlier this year to understand more about dilated and restrictive cardiomyopathy and to learn about new developments in research, medication
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/
Mental Health Awareness Week 2019
Hosted by the Mental Health Foundation, Mental Health Awareness Week takes place from 13-19 May 2019. The theme this year is Body Image – how we think and feel about our bodies. Body image issues can affect all of us at any age. During the week the Mental Health Foundation are publishing new research and campaigning