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 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
Save the Date!
SAVE THE DATE! 4th and 5th December 2020 This year is going to be extra special… we are looking to bring the global Alstrom community together!! This is the first year ASUK will be doing a virtual conference to bring people from across the world together for a global conference! Friday 4th December 2020 –
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
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 you
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
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
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 compassionate
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 that
In 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, weNational 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,
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,
In case you missed the ASUK Annual General Meeting
Don’t worry if you missed the AGM Alström Syndrome UK held their Annual General Meeting on Saturday 2nd November 2019 from 2:00 – 3:00 pm which took place via teleconference to enable as many people as possible to listen to our updates. The AGM celebrated the achievements of the organisation and family members over the last year.
YOU have the Power to Make a Difference in just 15 minutes!
YOUR data is critical in the fight to make a real difference to the lives of all those affected by Alström Syndrome (AS) YOU have the power to improve lives for the better by simply providing us with answers to some of the questions we have about infant health. ASUK have created an infant questionnaireIn 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
Awareness Animation is Launched!
ASUK is very excited to launch our Alström Syndrome ‘Living with a Rare Disease’ animation to raise awareness and understanding about this rare disease. Let’s all raise awareness and share this animation with friends, family, relevant organisations and professionals to spread the word about this ultra rare condition. Click on the image below to watchTime 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