Notice & Agenda of the ASUK Annual General Meeting (AGM)

Date: 15 Jan, 2019  No Comments  ASUK USER

Dear All, You are invited! Alström Syndrome UK are pleased to announce our Annual General Meeting has now been scheduled for Thursday 24th January from 7pm to 9pm via teleconference. The Board of Trustees, Chief Executive and Family Support team will all be in attendance. At the AGM we will celebrate the achievements of the organisation

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

Cardiomyopathy UK Information Day

Date: 24 Oct, 2018  No Comments  ASUK USER

  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