аЯрЁБс>ўџ 6ўџџџўџџџ5џџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџ вЭЩРсАСт\p- BАaР=œЏМ=рл3є)8X@"Зк1ШџоArial1ШџоArial1ШџоArial1ШџоArial1 џоArial1мџоArial1ШџоArial1мџМоArial1ШџМоArial1№џМоArial"Ѓ"#,##0;\-"Ѓ"#,##0"Ѓ"#,##0;[Red]\-"Ѓ"#,##0"Ѓ"#,##0.00;\-"Ѓ"#,##0.00#"Ѓ"#,##0.00;[Red]\-"Ѓ"#,##0.005*0_-"Ѓ"* #,##0_-;\-"Ѓ"* #,##0_-;_-"Ѓ"* "-"_-;_-@_-,)'_-* #,##0_-;\-* #,##0_-;_-* "-"_-;_-@_-=,8_-"Ѓ"* #,##0.00_-;\-"Ѓ"* #,##0.00_-;_-"Ѓ"* "-"??_-;_-@_-4+/_-* #,##0.00_-;\-* #,##0.00_-;_-* "-"??_-;_-@_-Є"Yes";"Yes";"No"Ѕ"True";"True";"False"І"On";"On";"Off"]Ї,[$Ќ -2]\ #,##0.00_);[Red]\([$Ќ -2]\ #,##0.00\)рѕџ Р рѕџ єР рѕџ єР рѕџ єР рѕџ єР рѕџ єР рѕџ єР рѕџ єР рѕџ єР рѕџ єР рѕџ єР рѕџ єР рѕџ єР рѕџ єР рѕџ єР р Р р+ѕџ јР р)ѕџ јР р,ѕџ јР р*ѕџ јР р ѕџ јР рР р0@ @ Р рp@ @ Р р0Р р8@ @ Р рx@ @  рp@ @  р @ р @Р рp@ @  р `@ @  рx@ @  р8@ @ Р р Р р  (@ @ Р р 8@ @ Р р 8@ @ Р р Р рР р x@ @  р(x@ @  р0Р р 8Р р8Р “€џ“€џ“€џ“€џ“€џ“€џ`…d)Sheet1…’FSheet2…™GSheet3Œ,Ў  ;џСС"ОќО?>OutputsOutcomesMeasureseTo ensure families receive the support and information they need in an appropriate and timely manner.One clinical trial drawing to a close, another about to start, both involving patients recruited with the assistance of NPDG (UK)jTo maintain active links with NPD Groups in Europe and the USA and to support said Groups as they develop.TargetsWhat do we want to achieve?)How will we know we have been successful?!How will we achieve our outcomes?2What is the time frame for achieving our outcomes?‘To fund the post of Clinical Research Nurse (CRS) for NPD to carry out aspects of clinical research to further understand this group of diseases.МNPDG (UK) are currently members of The Genetic Interest Group, CLIMB, GOLD and ACT; we also have close working ties with the Alzheimer's Society, MPS Society and the Gaucher's Association.jWe will use specific disease type focus groups to ensure we are providing relevant, practical information.UTo make successful grant applications, resulting in the continuation of the CNS post.We will gather feedback from members and service users through an annual survey, record data on the number of contacts with families/professionals and the type of enquiry made. We will receive informal feedback through our website. We hope to achieve 90% satisfaction rate.MThe collection, collation and dissemination of current, relevant information.lFeedback will be invited after publication of each issue of the newsletter and annually as part of a survey.Care and Support InformationResearch CollaborationmWe will evaluate the success of the clinic days through attendance and feedback forms completed by attendees.TTo increase knowledge of NPD, reports to be made to the Board of Trustees quarterly.—Positive feedback from those involved and the creation of an organisation that will facillitate the collection and collation of information/data on NPDFThe development and utilisation of a strong, supportive family network2The creation of an international registry for NPD.4Funding applications to be made throughout 2007/2008On-going: Whist there is still a need for this service, to ensure the provision of a high standard of care and support for those affected by NPDTo provide up to date information and advice through the provision of a central office and by means of the National Development Manager and Clinical Nurse Specialist, annual newsletters, care manuals, information leaflets, telephone help lines and a website.ПTo continue to provide a 24 hour contact and helpline number from the Central Office for use by over 100 families and associated care professionals and to answer general enquiries about NPD. ONewsletters to be produced and distributed in March and September of each year.mTo actively promote, support and where appropriate, fund scientific research into the Niemann-Pick diseases. NCRS employed in March 2006. Review of post to be undertaken in November 2007 3First meeting expected to take place in April 2008. To initiate and support an inaugural meeting of European Niemann- Pick disease Group s in order to explore the formation of a European Niemann-Pick Alliance.]To forge relationships with other relevant organisations, both in the UK and internationally.ДThe stimulation of further research unto NPD, resulting in enhanced knowledge and understanding of the disease and leading to the development of effective treatments and therapies.рTo closely liaise with pharmaceutical companies and clinicians regarding existing and possible future therapy developments for NPD. To ensure the timely dissemination of information to families and other interested parties.нClinics are planned throughout 2008 for NP-B and NP-C patients. Funding is to be sought to ease the financial burden of families attending. Social time will be set aside to encourage the strengthening of family networks.ХClinics are planned throughout 2007 for NP-B and NP-C patients. The NPDG (UK) Annual Family Conference will take place in June 2008. The 2008 Family Directory will be distributed in February 2008.gTo support the collation of information/data on NPD to facilitate research into this group of diseases.ЬTo continue to support the work of the Willink Biochemical Genetics Unit for Niemann-Pick diseases, through the further development of Family Clinic Days and the provision of genetic counselling services.ЁTo produce a comprehensive and informative newsletter and distribute to 550 members, medical and social care professionals and other interested parties. УTo provide and create opportunities to enable families to develop support networks through the provision of Niemann-Pick Clinics, the Family Directory, an e-forum and an Annual Family Conference.єTo continue to provide funding for the post of Clinical Nurse Specialist for NPD, based at Manchester Royal Children's Hospital. To identify potential funding streams and to make regular grant applications to ensure the continuity of this post.ЎThroughout 2008 we will continue to encourage informal fundraising and identify potential grant funding sources, making regular applications to support the work of the Group.ЩSuccessful fundraising events involving our members and volunteers, successful applications to grant funding bodies resulting in the forward movement and continual improvement of the work of the Group.ЌTo further develop and update the Group's website in order to provide current, relevant information and to include an e-forum, on-line conference booking and feedback page.МTo monitor the efficacy of the website by recording the number of hits per week, number of new registered users, use of forum and enquiries received. Work to be completed by December 2007.fA feedback page will be added to the website enabling users to pass on their comments and suggestions.ЄTo produce and distribute three Care Manuals, one for each type of NPD, dealing with all aspects of caring for an individual with NPD to families/care professionals–Draft copies of the Type A and Type C manuals now available. Meetings to be held in March 2008 to progress manual on Type B and finalise Type A and C.љTo record number of callers using the helpline/type of enquiry/ whether family or professional/ was information sent out as a result of the call. To further the education of families and professionals in all matters regarding this group of diseases..To implement a fundraising strategy that includes; the appointment of a Board Member with lead responsibility for grant funding issues and a Fundraising Sub-Committee responsible for stimulating general fundraising activities to ensure the continuation and improvement of services offered by the Group.lTo contribute to the development of a registry for Niemann-Pick diseases, first meeting held in August 2007.ƒNPDG (UK) has representation at the NNPDF (USA) Conference each year and has assisted in the formation of other European NP Groups.ъThe strengthening of relationships with the aforementioned groups and the forging of new links with other relevant groups, the pooling of information and resources to raise awareness and stimulate interest in NPD and related diseases.”The sharing of information and the effective use of resources, resulting in raised awareness and greater understanding of NPD and related diseases..]To strengthen and encourage close working relationships with other relevant organisations, in order to facilitate the sharing of information and the effective use of resources. 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