01709 210151 / 07716 135940 kerry.leeson@alstrom.org.uk

Latest News

Keeping you up to date

 

UK Strategy for Rare Diseases 2020

The Department of Health and Social Care has published its latest update to its Rare Disease Strategy implementation plan. This is the second iteration of this document, following the previous progress report that was published in February 2019. The document reviews...

Rare Disease Day

On the last day of February every year the rare disease community comes together to raise awareness of rare diseases and their impact. This year is particularly special as Rare Disease Day falls on a leap year so it is even more rare falling on the 29th February 2020....

Lights, Camera, Action!

Lights, Camera, Action! Not long to go now until the Rare Film Festival and Awards on the 10th February 2020 at Regent Street Cinema in London. Alstrom Syndrome UK's animation 'Living with a Rare Disease' will be showcased on the night and ASUK are delighted and...

Jnetics Screening Day

Asya Choudry, BDB's Community Engagement Manager has joined Jnetics for their screening event at JCoSS, Jewish Community Secondary School. This event is taking place as part of the GENEius programme, a comprehensive education and screening initiative targeting young...

Genetics Aware

A useful website offering information and advice to families and professionals, following work carried out by The Sheffield University. Their work examined the links between close relative marriage and genetic disorders and they have created a list of key messages to...

Alstrom Syndrome UK

“Our animation was launched on the 12th May to raise awareness, aid diagnosis and show a positive and enlightening image of the condition and our work. The response we have had, has been fantastic, ‘This animation is a work of brilliance!  So enlightening, helpful,...