General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Notice Of Annual General Meeting Of The Batten Disease Family Association

The 2018 AGM of the Batten Disease Family Association is taking place on 24 Nov at 1.30pm at Resource for London. During the meeting the election of the Chair of Trustees and are-election of a trustee will take place as…

Read More
NICE HST Update

We are pleased to say that a further meeting of the NICE Highly Specialised Technology (HST) Committee was held in Manchester yesterday about the Brineura treatment for CLN2. The meeting was attended by two patient experts who are both mothers…

Read More
Petition Delivered To Number 10 Downing Street

Thank you! Over 295,500 people signed the petition calling on NICE to approve the treatment for CLN2 and NHS England to fund the treatment. This is an amazing achievement so thank you to everyone who signed and promoted the petition.…

Read More
Update To Our Small Grants Programme

It is with regret that BDFA has decided to suspend our Small Grants Programme of financial assistance to families until further notice. This is not a decision that has been taken lightly and has been made for the good of…

Read More
Registration For NCL 2018 Is NOW OPEN!

Registration for NCL 2018 is now open on the conference website: http://www.ncllondon2018.com Please contact conference organisers Bioscientifica who can provide details of discounted rates for families: ncl2018@bioscientifica.com

Read More
BDFA CEO Announcement

The Board of Trustees are very pleased to announce the appointment of Samantha Barber as the BDFA’s new Chief Executive. Samantha will join the BDFA as Chief Executive on 21st May 2018. Prior to joining us, she is taking the…

Read More
NICE Say NO To The Use Of Cerliponase Alfa For Children With CLN2 (Late Infantile Batten Disease)

NICE say NO to the use of Cerliponase Alfa for children with CLN2 (Late Infantile Batten disease) BDFA Summary of NICE Decision NICE ECD Report SIGN THE PETITION HERE This decision means that children diagnosed with this devastating disease in…

Read More
Awareness Campaign For Childhood Dementia – Portland

Portland, a London-based public affairs and communications agency who specialise in health communications, have been developing a disease awareness campaign for childhood dementia. The aim of the campaign is to raise awareness of what childhood dementia is and the challenges…

Read More
The Juvenile Neuronal Ceroid Lipofuscinosis And  Education Project (2014 – 2017)

Click here to download the Paper This paper addresses some findings and experiences from the Juvenile Neuronal Ceroid Lipofuscinosis and Education Project (2014 - 2017). Juvenile Neuronal Ceroid Lipofuscinosis (JNCL) is also called CLN3 disease, Spielmeyer-Vogt Syndrome and Batten Disease.…

Read More
Brineura – Update

Despite the hopeful news of a European licence for Brineura - the new and only treatment for children diagnosed with CLN2 (Late Infantile Batten disease) - NHS England has now denied access to this only hope for children and families…

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.