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

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

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...
Ramadan at home

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

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

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!

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...