Dementia strikes children too
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure.
0800 046 9832
Niemann-Pick UK (NPUK) is a small charitable organisation dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases. They offer emotional and practical support, advice and information to those affected, as well as their families and the professionals involved in their care, from diagnosis and beyond. Their flexible support and advocacy service aims to ensure that individuals have access to the level of support required to meet their needs.
The NPUK team can help you to access beneficial services and equipment, and can provide helpful information, tools and resources that encourage understanding of Niemann-Pick disease and how it may affect your family.
Working closely with national and local health and social care providers, NPUK ensures that families are informed and have access to optimum care, treatment and services that can assist daily life and increase opportunities for independence and social interaction. In addition. they help raise much needed awareness and facilitate research into potential therapies.
0191 415 0693
The MPS Society is the only registered UK charity providing professional support to individuals, families and professionals affected by MPS and related diseases throughout the UK. They offer an individual Advocacy Support Service with skilled and experienced staff who can offer you a wide range of support depending on your or your family’s needs.
The rarity of these conditions means affected individuals and their families often experience difficulties accessing adequate needs-led support and services in the local area. The MPS Society provides a support network promoting awareness and understanding of the diseases and we work in partnership with you and your family as well as developing professional relationships with local health professionals.
The MPS Society’s Advocacy Team based at MPS House in Buckinghamshire supports individuals and families throughout the UK. They also have an All Ireland Advocacy Officer based at Belfast City Hospital.
0345 389 9901
BioMarin is a global biotechnology company that develops and brings to market innovative therapies for patients with serious and life-threatening rare and ultra-rare genetic diseases.