Latest News

Fizz Free February!

Date: 01 Feb, 2019  No Comments  ASUK USER

Go on pledge today and swop that pop, save money and stay healthy #GoFizzFree #FizzFreeFeb Fizz Free February has got off to a great start, with politicians, celebrities, schools and councils all pledging to give up fizzy drinks. Southwark Council started a campaign in 2018 to encourage their local area to give up fizzy drinks

Be Quick, Apply to join our Breaking Down Barriers project today!

Date: 22 Jan, 2019  No Comments  ASUK USER

Applications for Breaking Down Barriers Now Open Would you like to join Breaking Down Barriers? The first two years of the Breaking Down Barriers project has been a huge success! Each organisation taking part has received funding to deliver some fantastic individual projects and develop the services they provide to their members. As a result,

ASUK Annual Review Summary

Date: 22 Dec, 2018  No Comments  ASUK USER

The ASUK Annual Review Summary is now published! This summary captures our activities from the last financial year. We hope you agree that this gives a snapshot of how we have provided support as well as the daily achievements of many families and people living with Alström. Click below for access: ASUK Annual Review 2017-2018

Global Genes Summit 2018

Date: 24 Oct, 2018  No Comments  ASUK USER

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

ASSAI Family Day Padua – 13th October 2018

Date: 24 Oct, 2018  No Comments  ASUK USER

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 UK

Breaking Down Barriers Workshop September 2018

Date: 24 Oct, 2018  No Comments  ASUK USER

Under the leadership of Kerry Leeson Beevers we recently joined up with other patient organisations and support groups to workshop how we can collaboratively support inclusive services for all those affected by genetic conditions. This workshop is one of the many activities we have designed to share knowledge about the inequalities experienced by families in