ࡱ> "$ ! 6bjbj 8"'\\8;,g/.......$0j3.B{"BB..Bj8.B.+h=,P:8ji+..0/y+4$4 =,4=,LL6#,O..:v/BBBB4\ e:   SHAPE \* MERGEFORMAT  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 there from, and to advance the education and awareness of 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 Care and Support Provision of a 24 hour Helpline 0191 415 0693 Access to a Clinical Nurse Specialist for NPD, based at Manchester Royal Childrens Hospital and providing advice on all aspects of the disease. Home visits from the Clinical Nurse Specialist 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 Niemann-Pick 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 - www.niemannpick.org.uk Telephone advice from the Clinical Nurse Specialist and the Central Office Support Team. Collaboration with other relevant organisations, both nationally and internationally, to encourage the sharing of information and resources and to highlight best practice. Specialist information is also available for medical and social care professionals. Research NPDG (UK) fully funds the post of a part-time Clinical Research Nurse based at the Royal Manchester Childrens Hospital, enabling the collection of much needed data regarding clinical aspects of the disease The Clinical Research Nurse maintains a close liaison with pharmaceutical companies and researchers regarding existing and future developments in possible palliative treatments for this group of diseases. 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.     May 2010 Niemann-Pick Disease Group (UK)  (1MNQ ŭttttfXG h>hCJOJQJ^JaJh$:CJOJQJ^JaJh_CJOJQJ^JaJ h>h[,CJOJQJ^JaJ h>hICJOJQJ^JaJ,jEhMhM5CJOJQJU^JaJ.jhMCJOJQJU^JaJmHnHu&jhM5CJOJQJU^JaJ,jhMhM5CJOJQJU^JaJhM5CJOJQJ^JaJ o p  A E F R q gd$ & Fa$gd5kl$a$gdMgdI   F o t w }   ? 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