NPDG (UK) Support Services - An Overview
The main aims and objectives of NPDG (UK) are; to make a positive difference to the lives of those affected by Niemann-Pick diseases (NPD), relieve sickness and any distress which may arise therefrom and, to advance the education and awareness of such families, professionals and the general public in all matters concerning the disease.
The NPDG (UK) aim to provide effective support in the three main areas of care, information and research.
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Care and Support
- Provision of a 24 hour Helpline – 0191 415 0693
- Access to a Clinical Nurse Specialist for NPD, providing medical advice on all aspects of the disease.
- Families Officer providing non-medical advice to all NP Families
- Home/School visits from the Clinical Nurse Specialist/Families Officer as required
- Production of a Family Directory, encouraging the creation of family support networks.
- Organisation of an Annual Family Conference, providing networking opportunities for families who are geographically widely dispersed.
- Organisation of clinic days for children and adults.
- Provision of counselling and advocacy services to families.
Information
- Provision of information packs
- Regular newsletters
- Production and distribution of educational literature regarding NPD
- Website
- Telephone advice from the Clinical Nurse Specialist, Clinical Research Nurse and Executive Director.
- Collaboration with other relevant organisations, both nationally and internationally, to encourage the sharing of information and resources between other relevant organisations, both nationally and internationally.
- Specialist information is also available for medical and social care professionals.
Research
- The Group provide a Trustee memorial award for scientific submissions by young professionals who are, or will be, working on Niemann-Pick diseases.
- The dissemination of current information regarding developments in research to families and other interested parties.
For further information about the services we provide, please contact:
Toni Mathieson, Executive Director on 0191 415 0693 or email niemann-pick@zetnet.co.uk.
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