General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Screen Shot 2014 11 05 At 23.29.40

Improving Rare Disease Education and Training for UK Nurses: hugely important initiative to ensure earlier diagnosis and better focussed care.

The British government recently launched a first-of-its-kind national initiative, “UK Strategy for Rare Diseases,” to promote earlier diagnosis and treatment among the more than three million patients living with rare disorders in the UK. It calls for all health care providers to receive additional education and training, especially the specialist and support staff—primarily nurses—that the government calls “a lifeline” to those with a rare disease. The initiative also funds primary and specialty care services as well as biomedical research.

Read More Here – http://www.raredr.com/articles/Rare-Disease-Education-Training-UK-Nurses

Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease