General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Orphan Drug Designation By The European Medicines Authority

A great and much needed step forward for Batten disease, orphan drug designation by the European Medicines Authority, provides incentives for companies to conduct research into rare diseases lets hope accessible clinical trials will follow: To qualify for orphan designation,…

Read More
Together For Short Lives – Children’s Palliative Care Statement

Together for Short Lives have issued a statement concerning the new guideline on children’s palliative care published this week by the National Institute for Health and Care Excellence (NICE), they say: Despite the title, the new ‘End of Life Care…

Read More
Family Conference 2016

After our amazing Family Conference last weekend. We have posted the photos taken over the weekend on out facebook page for you to see and share! We will have our video up very soon!

Read More
Research Project At The Evelina London Children’s Hospital

An Exploration of Perceived Quality of Life in Families and Carers of Children with Batten Disease at Different Stages of the Condition We would like to inform you about a research project that is being run at the Evelina London…

Read More
When Ollie Met Harry

On Monday evening, 5 year old Ollie Carroll and his family attended the WellChild Awards Ceremony in London to receive his award for Most Inspirational Child (aged 4-6) from HRH Prince Harry. Brave Ollie, who has CLN2 (Late Infantile Batten disease),…

Read More
Ollie Wins A WellChild Award

We are so thrilled to see Ollie Carroll will receive a Well Child award, congratulations to you all and Ollie's Army Battling Against Battens for your amazing efforts in raising awareness and fundraising. For many parents, life’s simplest joys are found…

Read More
BATCure: Developing New Therapies For Batten Disease

BATCure is a 3-year research project funded under a European Union call (New Therapies for Rare Diseases). The goal of the project is to advance the development of new therapeutic options for patients and their families living with CLN 3,…

Read More
A New Challenge For Professor Jonathan Cooper

Long-time Batten disease researcher and BDFA Scientific Advisor Professor Jonathan Cooper is leaving King’s College London this summer to take up a new post at the Harbor UCLA Medical Center in Los Angeles. As in London, Jon will continue to…

Read More
How It Feels To Know You Will Outlive Your Child

There are few things more tragic than the sudden death of a child, an event that can leave parents bereft, heartbroken and railing at the unnatural order of things.

Read More
A Successful Education Training Day

Our Education Training Day at Linden Lodge last Friday was a great success. It was great to be able to bring professionals together to network and to learn more about Batten disease. We packed a lot into a short space…

Read More

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

You can also TEXT DONATE 

Text the words BDFA15 £2 / £5 / £10 to 70070

All donations help us to provide the best support we can to families affected by Batten Disease.

Thank you for your support.