Mission Statement
The BDFA's mission is to enable children and adults who are effected by Batten disease to live life to the full and to provide families with the care and support they need so that they do not walk this path alone.
Our objectives are to:
- To advocate for patients and families affected by Batten disease and influence the UK policy for rare disease.
- To promote research into the management of Batten disease to improve care and ultimately find a cure.
- To advance the education of the medical profession to increase awareness of Batten disease and reduce time to diagnosis.
- To provide support for affected families to enable them to access the services they need.
Organisational Strategy
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Elevate Standards of Care
- Advocate for the development of personal care plans for patients that brings together health, social and educational services.
- Facilitate the development of transition pathways to adult care.
Raise Awareness
- Educate healthcare, social care and educational professionals about Batten disease to raise awareness and reduce the time to diagnosis.
- Create tools and resources to provide patients, their families and carers with the information and service they need.
Build and Develop the Organisation
- Develop organisational and governance structure to support evolving organisation.
- Develop funding sources to ensure long-term financial stability and growth of the organisation.
- Develop policies and training platforms to ensure ongoing professional development and compliance with laws and regulations.
Support Research
Set up the UK Batten disease registry to:
- Generate and communicate evidence to raise awareness and facilitate the development of specialised patient pathways.
- Develop methods of identifying Batten disease to shorten the time to diagnosis and earlier intervention.
- Facilitate the development of tools for assessing and monitoring disease progression.