Alström Syndrome UK Advancing Diagnosis, Care, Treatment and Support for those living with Alström Syndrome in the UK

Corona Virus – STAY AT HOME

Stay at home to stop coronavirus spreading.
Protect yourself, your family and others. 

You can click on the link to find Public Health England’s advice for protecting those in vulnerable groups, such as Rare Diseases.

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

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 you live in Northern Ireland, your guidance around shielding can be found here:
https://www.nidirect.gov.uk/articles/guidance-shielding-extremely-vulnerable-people

Everyone is being reminded to follow Public Health England advice to:

  • Always carry tissues with you and use them to catch your cough or sneeze. Bin the tissue and wash your hands or use a sanitiser gel.
  • Wash your hands often with soap and water, especially after using public transport.
  • Use a sanitiser gel if soap and water are not available.
  • Avoid touching your eyes, nose and mouth with unwashed hands.
  • Avoid close contact with people who are unwell.

You can find information and advice from Public Health England at https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public

You can find out more about the Government’s response on their website www.gov.uk/coronavirus

NHS Guidance can be found by following the link to the NHS website  https://www.nhs.uk/conditions/coronavirus-covid-19/ 

For Alström Families
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.

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.

Watch our new animation here

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
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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

Breaking Down Barriers

ASUK News