аЯрЁБс>ўџ ;ўџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџ§џџџ>  !"#$%&'()*+,-./0123456789:ўџџџўџџџ=ўџџџўџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџRoot Entryџџџџџџџџ РF7В€“Ы<WorkbookџџџџџџџџИqSummaryInformation(џџџџьDocumentSummaryInformation8џџџџџџџџџџџџL ЊЭЩсАСт\pSUE LOWE BАaР=œЏМ=рл3є)8X@"Зк1ШџArial1ШџArial1ШџArial1ШџArial1 џArial1мџArial1ШџArial1мџМArial1ШџМArial1№џМArial1h8МZCambria1,8МZCalibri18МZCalibri1м8МZCalibri1мZCalibri1мZCalibri1м<ZCalibri1м>ZCalibri1м?МZCalibri1м4МZCalibri1м4ZCalibri1м МZCalibri1м ZCalibri1ШџZArial1мZCalibri1мМZCalibri1м ZCalibri1мZCalibri"Ѓ"#,##0;\-"Ѓ"#,##0"Ѓ"#,##0;[Red]\-"Ѓ"#,##0"Ѓ"#,##0.00;\-"Ѓ"#,##0.00#"Ѓ"#,##0.00;[Red]\-"Ѓ"#,##0.005*0_-"Ѓ"* #,##0_-;\-"Ѓ"* #,##0_-;_-"Ѓ"* "-"_-;_-@_-,)'_-* #,##0_-;\-* #,##0_-;_-* "-"_-;_-@_-=,8_-"Ѓ"* #,##0.00_-;\-"Ѓ"* #,##0.00_-;_-"Ѓ"* "-"??_-;_-@_-4+/_-* #,##0.00_-;\-* #,##0.00_-;_-* "-"??_-;_-@_-Є"Yes";"Yes";"No"Ѕ"True";"True";"False"І"On";"On";"Off"]Ї,[$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 рѕџ ДŸ рѕџ Д­ рѕџ ДЊ рѕџ ДЎ рѕџ Д› рѕџ ДЏ рѕџ ДЌ рѕџ Д рѕџ Д‹ рѕџ ДЎ рѕџ ДЌ рѕџ ДГ рѕџ Дž рѕџ Д рѕџ Д‹ рѕџ ДЄ рѕџ ДБ рѕџ ДД рѕџ ДО рѕџ ДŠ рѕџ ДЙ рѕџ ДЄ рѕџ ДБ рѕџ ДЕ рѕџ Д­ рѕџ ”— — – рѕџ ”ffППЗ р+ѕџ јР р)ѕџ јР р,ѕџ јР р*ѕџ јР рѕџ єР рѕџ ДЊ р ѕџ дPР р ѕџ дP Р рѕџ д Р рѕџ єР рѕџ ”— — Џ рѕџ д`Р рѕџ ДЋ рѕџ œ  š рѕџ ”ПП– р ѕџ јР р ѕџ єР рѕџ дa>Р рѕџ єР 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 ||VШ2ЧS}-}; 00_)}A}1 00_)[$Ќ -}A}2 00_)џ?[$Ќ -}A}3 00_)23[$Ќ -}-}4 00_)}A}0 aџ00_)ЦяЮџ[$Ќ -}A}( œџ00_)џЧЮџ[$Ќ -}A}7 œeџ00_)џыœџ[$Ќ -}‘}5 ??vџ00_)џЬ™џ[$Ќ -џ##0.џ џ џ}‘}9 ???џ00_)ђђђџ[$Ќ -???џ##0.???џ ???џ ???џ}‘}) њ}џ00_)ђђђџ[$Ќ -џ##0.џ џ џ}A}6 њ}џ00_)џ€џ[$Ќ -}‘}* 00_)ЅЅЅџ[$Ќ -???џ##0.???џ ???џ ???џ}-}= џџ00_)}x}8џџЬџ00_)ВВВџЅЅЅџ[$ВВВџ???џ## ВВВџ???џ ВВВџ???џ}-}/ џ00_)}U}< 00_)[$## }A}" 00_)[$}A} 00_)ef[$}A} 00_)ЬL[$}A} 00_)23[$}A}# 00_)[$}A} 00_)ef[$}A} 00_)ЬL[$}A} 00_)23[$}A}$ 00_)[$}A} 00_)ef[$}A} 00_)ЬL[$}A} 00_)23[$}A}% 00_)[$}A} 00_)ef[$}A} 00_)ЬL[$}A} 00_)23[$}A}& 00_)[$}A} 00_)ef[$}A} 00_)ЬL[$}A}  00_)23[$}A}' 00_) [$}A} 00_)ef [$}A} 00_)ЬL [$}A}! 00_)23 [$“ 20% - Accent1’M’џ 20% - Accent1 efлхёџ џ%“ 20% - Accent2’M’"џ 20% - Accent2 efђнмџ џ%“ 20% - Accent3’M’&џ 20% - Accent3 efъёнџ џ%“ 20% - Accent4’M’*џ 20% - Accent4 efхрьџ џ%“ 20% - Accent5’M’.џ 20% - Accent5 efлюѓџ џ%“ 20% - Accent6’M’2џ 20% - Accent6  ef§щйџ џ%“ 40% - Accent1’M’џ 40% - Accent1 ЬLИЬфџ џ%“ 40% - Accent2’M’#џ 40% - Accent2 ЬLцЙИџ џ%“ 40% - Accent3’M’'џ 40% - Accent3 ЬLзфМџ џ%“ 40% - Accent4’M’+џ 40% - Accent4 ЬLЬРкџ џ%“ 40% - Accent5’M’/џ 40% - Accent5 ЬLЖншџ џ%“ 40% - Accent6’M’3џ 40% - Accent6  ЬLќеДџ џ%“ 60% - Accent1’M’ џ 60% - Accent1 23•Гзџ џџџџ%“ 60% - Accent2’M’$џ 60% - Accent2 23й—•џ џџџџ%“ 60% - Accent3’M’(џ 60% - Accent3 23Тжšџ џџџџ%“ 60% - Accent4’M’,џ 60% - Accent4 23ВЁЧџ џџџџ%“ 60% - Accent5’M’0џ 60% - Accent5 23“Энџ џџџџ%“! 60% - Accent6’M’4џ 60% - Accent6  23њРџ џџџџ%“ "Accent1’A’џAccent1 OНџ џџџџ%“ #Accent2’A’!џAccent2 РPMџ џџџџ%“ $Accent3’A’%џAccent3 ›ЛYџ џџџџ%“ %Accent4’A’)џAccent4 €dЂџ џџџџ%“ &Accent5’A’-џAccent5 KЌЦџ џџџџ%“ 'Accent6’A’1џAccent6  ї–Fџ џџџџ%“(Bad’9’џBad џџЧЮџ џœџ%“) Calculation’’џ Calculation џђђђџ џњ}џ%џџџџџџ џџ“* Check Cell’’џ Check Cell џЅЅЅџ џџџџ%џ???џџ???џџ???џ џ???џ“+€џ’ ’џComma“,€џ’(’џ Comma [0]“-€џ’&’џCurrency“.€џ’.’џ Currency [0]“/Explanatory Text’G’5џExplanatory Text џџ%“ 0Good’;’џGood џЦяЮџ џaџ%“1 Heading 1’G’џ Heading 1 I}џ%OНџ“2 Heading 2’G’џ Heading 2 I}џ%џ?ЈРоџ“3 Heading 3’G’џ Heading 3 I}џ%23•Гзџ“4 Heading 4’9’џ Heading 4 I}џ%“ 5Input’u’џInput џџЬ™џ џ??vџ%џџџџџџ џџ“6 Linked Cell’K’џ Linked Cell џњ}џ%џџ€џ“ 7Neutral’A’џNeutral џџыœџ џœeџ%“€џ’"’џNormal“ 8Note’b’ џNote џџџЬџџВВВџџВВВџџВВВџ џВВВџ“ 9Output’w’џOutput џђђђџ џ???џ%џ???џџ???џџ???џ џ???џ“:€џ’$’џPercent“ ;Title’1’џTitle I}џ%“ <Total’M’џTotal џ%OНџOНџ“= Warning Text’?’ џ Warning Text џџџ%ŽXŽTableStyleMedium9PivotStyleLight16`…љMSheet1…˜nSheet2…(pSheet3ššЃЃŒ,Ў  ;џССыќј?>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)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?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.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 network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 NPDПTo 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. mTo actively promote, support and where appropriate, fund scientific research into the Niemann-Pick diseases.  ]To forge relationships with other relevant organisations, both in the UK and internationally.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.gTo support the collation of information/data on NPD to facilitate research into this group of diseases.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.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.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 professionalsљTo 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.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. To enable the development of a stronger voice with which to influence national policy, stimulate interest in and further the knowledge and understanding of these diseases. –To collaborate and communicate with other relevant organisations on matters of funding and research and to facilitate the dissemination of informationThe provision of an up to date information and advice through the Central Office and by means of the Executive Director, Information Officer and Clinical Nurse Specialist, annual newsletters, care manuals, information leaflets, telephone helpline and website.дWe will gather feedback from members and service users through surveys, meetings and feedback forms on our website, record data on the number of contacts with families/professionals and the type of enquiry made. 2Funding applications to be made throughout 2010/11ЖTo continue to support the work of the AGNSS Centres for Niemann-Pick diseases, through the further development of Family Clinic Days, and the strengthening of working relationships.рClinics are planned throughout 2010/11 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.ЯTo provide and create opportunities to enable families to develop support networks through the provision of Niemann-Pick Clinics, the Family Directory, a parent/carer e-forum and an Annual Family Conference.ЬClinics are planned throughout 2010/11 for NP-B and NP-C patients. The NPDG (UK) Annual Family Conference will take place in September 2010 The 2011 Family Directory will be distributed in February 2011.БThroughout 2010/11 we will continue to encourage informal fundraising and identify potential grant funding sources, making regular applications to support the work of the Group.yType A manual complete. Type C manual draftnow available. Meetings to be held in March 2011 to progress manual on Type BЇTo produce a comprehensive and informative newsletter and distribute to over 1000 members, medical and social care professionals and other interested parties. NNewsletters to be produced and distributed in April and November of each year.žTo further develop and update the Group's website in order to provide current, relevant information and to facilitae a parent/carer e-forum and feedback page.ЃTo monitor the efficacy of the website by recording the number of hits per week, use of forum and enquiries received..To ensure content is relevant and up to date.‘To fund the post of Clinical Research Nurse (CRN) for NPD to carry out aspects of clinical research to further understand this group of diseases.NCRN employed in March 2006. Review of post to be undertaken in November 2010 ДThe stimulation of further research into NPD, resulting in enhanced knowledge and understanding of the disease and leading to the development of effective treatments and therapies.ITo contribute to the development of a registry for Niemann-Pick diseases.VThe creation of an international registry for NPD. This item will be realised in 2011.„To maintain active links with International NPD Groups through the INPDA and to support the formation of new Groups as they develop.АNPDG (UK) to have representation at International Group meetings and conferences where possible and to continue to assist in the formation of other NP Groups around the world..ГTo strengthen and develop relationships with current contacts - NPDG (UK) are currently members of The Genetic Alliance, CLIMB and ACT; we have close working ties with the Alzheimer's Society, and with other LSD patient Groups, such as the MPS Society and the Gaucher's Association through the LSD Patient Group Collaboration. We realise the need to seek further possibilities for collaboration both here in the UK and internationally.To support the newly formed International Niemann- Pick Disease Alliance. in order to explore the formation of a European Niemann-Pick Alliance.R3rd teleconference to take place Nov 2011 and face to face meeting in autumn 2011.џBi- Щ.lЧ0jс3„.8б …?(ўDЁ(IЫcc’––Bх››ŒŒ ЊЭЩ '&eиln  dќЉёвMbP?_*+‚€%џСeb&C&"Arial,Bold"&14NPDG (UK)&"Arial,Regular"&10 &"Arial,Bold"&14Strategic Delivery Plan 2010 - 2011ƒ„&M&“Щd2Щ?' …BЁP(Ф?(M&“Щd2щ?)M&“Щd2й?MЊhp LaserJet 3030 PCL 6мЬCя€ъ odXXLetterџџџџDINU"L€ћ+WSMTJhp LaserJet 3030 PCL 6InputBinFORMSOURCERESDLLUniresDLLOrientationPORTRAITHPOrientRotate180FalseMediaTypeAutoHPPrintOnBothSidesManuallyFalseHPManualDuplexDialogItemsInstructionID_01_NPPHPManualFeedOrientationFACEDOWNHPOutputBinOrientationFACEDOWNHPManualDuplexDialogModelModelessHPManualDuplexPageOrderEvenPagesFirstHPMapManualFeedToTray1TrueOutputBinUpperEconomodeFalseTTAsBitmapsSettingTTModeOutlineRETChoiceTrueFastResFalseHPColorModeMONOCHROME_MODEHPPDLTypePDL_PCL6HPPJLEncodingUTF8HPJobAccountingHPJOBACCT_JOBACNTHPPCL6PassThroughTrueHPFontInstallerTRUEResolution600dpiPaperSizeLETTERHPXMLFileUsedHPXMLFileNamePrintQualityGroupPQGroup_2€IUPHdLetter [none] [none]Arial4PРРРРРРd€?TONI MATHIESON<Automatic>j§ i§ kџ kў mљ mљ џџџџЁ"dXXM&“Щd2Щ? …BЁP(д?œ&œT(U} $ } Ж"} m"} m'  h@ …@ Є@ ž@ ј@ 4@ T@ c@ p@ Y@ ‚@ 7@ О@ •РE ’@ ъ@ @†@d@З @s@џџџџџџџџџџ§ L§ L§ L§ L§ B§ B§ B § B§ RО III§ M§ J'§ @§ ?(K§ ?§ ?)§ ? 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