NPUK is a member of the UK LSD Patient Collaborative Group. The collaborative is comprised of patient organisations representing those affected by lysosomal storage disorders (LSDs) who have joined forces to create a strong lobbying and action group for LSD patients and their families in the UK. This provides a stronger voice, and particularly at this challenging time a unifying effort to support our joint communities:
The collaborative aims to provide an understanding of LSDs by working in partnership to advance standards of care and to enhance the wellbeing of those affected by LSDs. See below for a list of the members and to find out more go to www.lsdcollaborative.org.uk
The AGSD provides support and help for individuals and families affected by Glycogen Storage Disease (GSD).
The Batten Disease Family Association (BDFA) is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten Disease.
The CATS Foundation supports families affected by Tay-Sachs by offering equipment, information, and funding for research.
The Gauchers Association promotes awareness, pioneers research and provides support and information for those affected by Gaucher disease.
The Society for Mucopolysaccharide Diseases (The MPS Society) is a voluntary support group founded in 1982, which represents from throughout the UK over 1200 children and adults suffering from Mucopolysaccharide and Related Lysosomal Diseases including Fabry Disease, their families, carers and professionals.
We, NPUK, are a charitable organisation dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases. We raise much needed awareness, provide practical and emotional support, advice and information and facilitate research into potential therapies.
SBUK work in the UK to save and improve the lives of babies through new-born screening and treatment of a wide range of genetic diseases.
With the risk of catching coronavirus steadily decreasing, the UK Government yesterday announced changes to the future of the shielding programme. From 6 July those shielding will be able to meet outdoors, in groups of up to six people from outside their household, with social distancing. If you live alone (or are a lone adult with dependent children under 18), you will be able to form a support bubble with another household. From 1 August, many people will no longer need to shield, and the advice will be that you can visit shops and places of worship, but you should continue to maintain social distancing whenever possible...Read more