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

Latest News

Keeping you up to date

 

National Disease Registration Service – Free Webinars

This autumn, Public Health England's National Disease Registration Service (NDRS) is running a series of free webinars, so they can continue to share information about their latest work and developments. Each, lunchtime webinar will focus on a different area of NDRS,...

National Genomic Test Directory – Consultation

Don't miss out on this opportunity to have your views heard. The NHS England and NHS Improvement (NHSE&I) have launched a consultation in relation to the management and updating of the National Genomic Test Directory, which is part of the NHS Genomic Medicine...

Join the BDB Network!

The Breaking Down Barriers project is going from strength to strength, now working with 28 organisations across the UK. We would now like to offer our services to more organisations and individuals, who would like to make a difference and improve the engagement of...

Genome UK: the future of healthcare

National Genomic Healthcare Strategy published The Government has launched the new National Genomic Healthcare Strategy - "Genome UK: the future of healthcare"  which sets out how the genomics community will come together to harness the latest advances in genetic and...

Patient Insight Series

Check out this fantastic video from one of our members Metabolic Support UK. This video is part of their Patient Insight Breaking Down Barriers Series, which explores the impact that a rare disorder can have on patients and families from the BAME community. In this...

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...

Ramadan at home

WHAT IS RAMADAN? In 2020, Ramadan will be from around the 23rd/24th April for 29/30 days. It is the holiest month of the year for Muslims as it is when the Qur’an was revealed to the Prophet Muhammad (PBUH). During the month of Ramadan, Muslims around the world will...

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,...