ࡱ> #% !"'` bjbj .$) %j  JJJ8$ .:""""iii-------$0h2- G"i- ""%-Feee 8" "-e-ee+  6-" ʽ+Jg,^-$..&,33(6-3 6-(i^eKLBiii--jiii. dJ J    HYPERLINK "http://www.niemannpick.org.uk/sitemap.html"  The Niemann-Pick Disease Group (UK) is a charitable organisation offering care, support and information to families affected by any type of Niemann-Pick disease. It also promotes relevant research, raises awareness and offers education and information to carers, associated professionals and the general public. The Group gives emotional, as well as practical support and has developed a strong family support network, helping to reduce feelings of isolation and despair. The Group was first formed in 1991 by parents Susan and Jim Green following the diagnosis of Niemann-Pick Disease Type C in two of their three children. Awarded charitable status in 1996, membership has now grown to just under 500. The Group employs an Executive Director and an Administration Officer, who ensure the smooth running of the organisation. They provide support and information to families and associated professionals in the form of a 24-hour help line, educational literature, regular newsletters and bulletins. - A comprehensive website is also available, providing information on all aspects of Niemann-Pick diseases plus practical advice for daily living To further support families, the Group funds the salary of a full time Clinical Nurse Specialist, providing expert care and practical advice, plus home visits whenever necessary. Genetic counselling and advocacy services are also provided. In 2006, the Group employed a Clinical Research Nurse to enable the collection of much needed data regarding clinical aspects of this group of diseases. The creation of this post has the potential to improve the understanding of Niemann-Pick disease, stimulate research and assist in the development of therapies. Both of these specialist nurses are based at the Manchester Royal Childrens Hospital and work alongside the Medical Adviser to the Group, Dr Ed Wraith, Consultant Paediatrician and Director of the Willink Biochemical Genetics Unit. An annual Trustee Memorial Award is provided to young professionals who are able to provide an original contribution to the scientific or public understanding of the Niemann-Pick Diseases and / or their treatment or cure. The Group holds an Annual Family Conference, comprising of adult and childrens programmes and incorporating the Annual General Meeting. The aim of the Conference is to address the needs of all those affected by Niemann-Pick diseases, their families, and the health and social care professionals involved in their care. As well as highlighting the most recent advances in research, the Conference provides an ideal opportunity to strengthen our family support network by encouraging families to share their thoughts and experiences with others in a similar situation. Professional delegates, attending the conference, tell us how much they value the opportunity to meet, network and share their skills with families and colleagues For further information please contact the Niemann-Pick Disease Group (UK): Niemann-Pick Disease Group (UK) 11 Greenwood Close, Fatfield, Washington, Tyne and Wear, NE38 8LRTelephone: 0191 Telephone 0191 415 0693 Email;  HYPERLINK "mailto:niemann_pick@zetnet.co.uk" niemann_pick@zetnet.co.uk Website:  HYPERLINK "http://www.niemannpick.org.uK" www.niemannpick.org.uK     PAGE  PAGE 1 Niemann-Pick Disease Group (UK) Information about the work of the Charity, Registered Number, 1061881 WYZ 3 4   ZοvhvhvhvhZMh v5OJQJ^JaJh vOJQJ^JmH sH h vCJOJQJ^JaJh vOJQJ^JaJh vCJOJQJ^Jh vOJQJ^JaJh vOJQJ^Jh vjh vUh v5CJ,OJQJ^JaJ,h v5CJOJQJ^JaJ&jh v5CJOJQJU^JaJ9jh v5CJOJQJU^JaJmHnHsH tH u3 4   x)+,./1@&gd)N,.68BDQS[kzĬiXiB*HhTjˆh vOJQJ^JmHnHu!h vOJQJ^JmHnHsH u.HhTjˆh vOJQJ^JmHnHsH u!h vOJQJ^JaJmHnHu2HhTjˆh vOJQJ^JaJmHnHsH u.HhTjˆh vOJQJ^JaJmHnHu5HhTjˆh vOJQJ\^JaJmHnHsH uh v5OJQJ^JaJ&Hhcfh v5OJQJ^JaJ &'()*,-/ܴ𢒇t`SIA=A=h.Tjh.TUh vOJQJ^Jh v0JmHnHsH u&HhTjˆh v0JmHnHsH u$j0h vUmHnHsH uh vmHnHsH ujh vUmHnHsH u"HhTjˆh vmHnHsH u!h v0JOJQJ^JmHnHu,jEh vOJQJU^JmHnHu&jh vOJQJU^JmHnHuh vOJQJ^JmHnHu/02356<=>@AGHIJKMNijopͻ߱h vOJQJ^Jh vCJ\aJh v5\aJ h v\aJh0JmHnHuh v h v0Jjh v0JUh.Tjh.TU1245>?@KLMNop$a$h]h&`#$,1h. 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