REGISTERED COMPAiYY NUMBER: 077911071 (EnglAnd and Wales) REGISTERED CHARITY NUMBER: 1144342 (England And Wales) REGISTERED CHARJTY NUMBER: SC043576 (Seotland) REPORT OF THE TRUSTEES AND UNAUDTTED FINANCIAL STATEMENTS FOR THE YEAR ENDED JI DECEMBER 2020 FOR NARCOLE *AAE4Y6H6" 3010912021 COMPANIES HOUSE A71 NARCOLEPSY UK CONTEI¥TS OF THE Flly ANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 21120 Page Report of the Trusttts IDdependent Exlrniner's Report Statemeni Finam¢ial A¢tiTriti¢5 Statement ol Ffinamelai Positiox Notes ¢0 the FiM*nei*l Statemettts 8 to 15 NARCOLEPSY UK GISTERED NUMBER: 07791K171 REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2020 The trustees present their report and accounts for the year ended 31si Dttember 2020. which aTe also preparfAI to rnee¢ the requirements for a DiTectols report and accounts for companies house purpose. The flljancial statements comply with the chan.lies Act 2011. the companies Act 21X)6. the Memorandum and Arti¢les of Association, and Accounting and RepOrt￿g by Charities." Statement of Retommended Praciice applicable to charities preparing th¢ir ￿￿Oun[S in accordance with the Financial Reporting Stsndard applicable An the UK and Republic of Ireland (FRS 102) {effective l Jaouary 20151. OBJECTIVES AIYD ACTIvrriES As sei out in its Articles of Association. the obieetives of Narcolepsy UK are to pr(>vide relief and aid to those suffering from nueolepsy. To that ert4 we support people with naTcolepsy. their families,carers and others Inter￿ted in Improving their quality of life. Our principal activities to achieve these objectives are: - The prornotion and organizafion of conferences relaiing io narcolepsy and its effects. - The promotion anivor assistsnce in promoiing •)d carrying oui resear￿ surveys and investigations inio narcolepsy and its effects. - Creating and fjJndiJ]g strategies that mak¢ this work possible. - Arnging and providing exkn"bilions. meeting&lectures. ¢l&sses and training ¢(YJTses. Collecting and distributing inforn)aiion. primarily through the Narcolepsy UK media portfolio comprising website. FacelK)ok. Twitter and social media generally. Narcolepsy UK'S achievements in relatioD to objKtives are summaTised below und¢r the h¢ading Achievements and Perf0M￿l¢t. Our vision Is to help provide a world where narcolepsy is Unders￿0d and people with narcolepsy have the support they need to ensure that th¢ir rights are upheld and they have the same Op￿rn￿lties as others in sociery. We will deliver our objectives by". -Raising professional, political and public awareness and ut)dersranding of the needs of people with narcolepsy. their families and ¢arers. - Campaigning io influence the policies of legislators and fijnding bodies. - Delivering rel¢vant susthinable services that satisfy the needs of people with narcolqjsy. their farnilies attd carers. Providtng information and pracu¢a] SUPWTrrt (o people with narcolepsy. theEr families and carers,either directly, in pattretship with others or through facilRtating and supponing the Work of otheroTganisarions. . Supponing research Anio the effects and maDagem¢nt of narwl¢psy. We seek to work in parthership with those who share our vision and mi&siort. Our straiegi¢ aim is io achieve all this through a combination of fvndraisiog, ¢onunuing dialogu¢ with politicians, medical professionats, other paiient groups across the European Uniort in partieular and a vartety of PTojects. Page I NARCOLEPSY UK GISTERED NUMBER: O779(K171 REPORT OF THE TRUSTEES R THE YEAR EF4DED 31 DECEMBER 2020 ACHIEVEMENT AND PERFORMANCE Core activities Our core activilies remained the same but with ¢mphasi$ of d¢liv¢ring th¢ Nwl¢psy Charter and providing praciical support for people with narcolepsy. Our membership increased from 2121 to 2438 ov¢r th¢ 12 month perityl. OUT Narcolepsy Charter was wed by 1108 peopk. ExternMI Engggement The Corona 19 pandemic had a limitrd impact ort our ability to remain functIonll￿ as ￿rrnal throughout 2020 as we alr¢ady had stsff workmg remotely and equipped lor this purw)se and throughout year. we continued io engage aciively with a variety of exiemal organisaiions with activity focused on relaiillg the needs of people with narcolepsy in the UK rneasured against th¢ fmdings outlined in our Narcolepsy Charter. We did not furlough any staff as we fouDd that the Deed forour services in¢reas¢d rather than decreased and we tIKTrk the decision to be present for the comrnuniry w¢ suppon ahead of any inier¢st in self-pr¢servation. We did this in the full knowledge that should we find ourselves unable to fvnd the charity in the futur4 we would have to revert to a purely voluntary role which. whilst diminished, we still be preferable to no support. Aciivilies focusscd on etnotionai sUPP)rt for people struggling with the impact of I￿kdOWn{s> and 1055 of in¢otn¢ I benefits and we continued our practice of positive In￿rven11On whewe we were approached for assistance. Our already esthblished rerno￿ workll)g platform Cnabled us to maintain re]&tionships with other patient group4 clinicians and industry contacts and at several ￿ints in the pandemic, we were able to intercede and coordinate the provision of some of ow specialised medicines io those who were unable ￿ travel due to government restrictions or shielding requiretnents. We are extremely graiefvl for the assistsnce that was provided io some of our membus by UCB Pharma Ltd in this regard. All engagement with pharn)aceutical companies was carried out in accordance with our policy s(atement, "Working with Pharn]aceutical Cgmpani¢s' fwsi adopted in 2015_ Our Chair continued to play a pivothl role in this fleld and we regard our many strong relationships with ix)th longsthnding and newer entrants to the sleep & neurology world to be on¢ of our major styength& Page 2 NARCOLEPSY UK GISTERED NUMBER.. 07790071 REPORT OF THE TRUSTEES FOR THE YEAR ENDED MBER 2020 FINANCIAL REVIEW Financial Review and R&sults for the year. The S(atemeni of Financial Activity reflects all incoming resources receivabk in the period iTrespe¢tive of whcn lh¢ income is spenL The Trnstees are satisfied with the rtsults lor the penod. ReservÈ5 policy and going concern Free rG5erves available for use by NaTcolep5y UK are dc￿ed io be those that are readily Tealisible, less fund$ whos¢ uses are resiricted or designateAI for particular puyposes. Narcolepsy UK introduced a policy r¢lating to reserves. Unrestri¢ted ass¢ts should bE apportioned bctwecn an "operating reserve" held to Cover six months. flow, and then a"fd¥Pital r¢s¢rv¢' to be h¢ld against fubJre liability to expenditure. The operational reserve Should hold liquid a&sets (cash or near cash). the tothl of which Should equate to at leasl six months, Cash flow. However, this is noi always possible requiring catt￿1 managemen¢ of available funds durit)g criiical peri(th and sourcing n¢w income streams. tn the medium lern] the TnLsiees believe thai all aciiyiiies should b¢ self-funding and any additional income should be placed in a free reserve whose policy should b¢ io maximise in¢om¢. With income. the major risk is of a decline in Trust-rclated income particularly thEe to econo￿1¢ or other factors leading to both declining legacy valtses and red￿ed donations. THi$ 1$ something which has been and will continue to be add￿sSed on a daily basis. Alongside this MO￿ project related funding will be sourced. The TrUS￿eS have reviewed the circumstances of Nar¢olq6y UK and ¢onsider that adequate resour¢¢s conlinue to bc available to fund the activiti&% of the charity in the m¢dium t¢rni. Th¢ tnLSt¢¢s ar¢ ol the view the charity 1$ a going concern. STRUCTUTIE, COVERNANCE AND MANAGEMENT GoYerniDg document The charity is controlled by its governing documeni a deed of trust, and constibjtes & limited Company, limited by guarantee, as deflned by the Compani¢s Aa 2(M)6. REFERENCE AND ADMIf41STRATIVE DETAll Registered Cornpiny number 07790071 (England ond Wales) Registered Chxrity number I144342 (ED818nd and Waks) SC043576 (Scotland) Registered office Yew Tree House The Shrubbery Church Street Si N¢ots Cambridgeshire PE19 2BU Trustee$ M M O'Neill E J Coates T J Kavanagh A J Molloy E H Nicholls H Strongman Chair Trustee Trnsiee Truste¢ TTUStee Trustee Comp4ny Secr¢tsry MTSN S Rule Page 3 NARCOLEPSY UK GISTERED NUMBER: 077￿￿71 REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 202 REFERENCE AND ADMtNISTRATtVE DETAILS IndepeDdent Ex#miner Bra(Lshaw Jolu)son Chartered Accountants Croft Chambers I l Bancroft Hiichin Hertlordthir¢ SG5 IJQ Approved by order of the board of trwtees on ....................................... ... . and signed on its behalf by: M M O'Neill- Trust¢¢ Page 4 INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF ARCOLEPSY UK lttdependent examiner's report to the trustees of Nareolepsy UK ('the Compatty.) I rew)rt to the charity tnjstees on rny examination of the accounts of the Company for the year ended 31 December 2020. Respothsibilities •nd b•$i3 of report As the CI￿lty,$ trusiees of the Company (and also its threctors for the pur￿)se$ of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Compani&% Aci 2006 ('the 21K)6 Act). Having satisfied myself that the accounts of the Company are noi Tequired to be audited under Part 16 of the 2006 Act and are eliEJble for independent examination. I retM)rt in respeci of my examination of your clwity's accounts as Carried out under section 145 of the Clwiiies Act 2011 ('the 2011 Aci.). In carrying oui my examination I have followed the Directions given by the Clwity conm11￿10￿ under seciion 145(5) (b) of the 2011 Act. Independent examiner's staiemettt I have ¢ompleied my exalllinatioll. I confum tha¢ no matters have come to my attention in ci)nneclion with the examination giving me cause ￿ believe: accounting [￿OrdS were not kept in respect of the Company as required by section 386 of the 2006 Ac¢ or the accounts do not accord with those records. or the accounts do not comply with the ac¢ouniing requirements of section 396 of the 2006 Act other than any requirement that the accounts give a mie and fair view which is noi a matter considered as part of an ind¢pend¢nt examination.. or the accounts have not be￿ prwed in aCcorda￿e with the [neth(￿ 8nd PTinciples of the Statement of Recommended Pracii¢e for accouniing and reporting by charities (applicable to Charities preparing their accountg in ac￿r{lanCe with the Financial Reporting Stsndard applicable in the UK and Republic of Ireland (FRS 102)). I have no concerns and have Come acro&s rto other matter5 in connection with th¢ examination lo which alt¢ntion should be drawn in this report in order to enable a propcr undet5taDding of the accounts to be reached. Neil C Harding FCA Instituie of Chartered A¢countsnts in England and Walcs Biadshaw Johnson Chartered Accountants Croft Chambers I l Bancroft Hitchin Henfordshir¢ SG5 IJQ Date.. Page S NARCOLEPSY UK TATEMENT F FINAN TIVITIES FOR THE YEAR ENDED 31 DECEMBER 2020 31.12.20 Totsl fijnds 31.12.19 Total funds Unrtstricied fimd Restricted fund Noies INCOME AND ENDOWMENTS FROM Donations and legacies 69.443 11.375 80,818 98.602 Other trading activitie$ Investh)ent income lJ68 23 1,368 23 12.666 95 Total 70.834 I lJ75 82,209 111.363 EXPENDITURE ON RaE$ing funds 2,580 2.580 40,482 Charitable aetivitles Narcolepsy UK 58,480 58,480 78.672 Total 61.060 61,060 119.154 NET INCOMFJIEXPENDITURE) 9.774 11.J75 21.149 (7.791) RECONCILIATION OF FUNDS Total funds brought forward 14.039 21,LKI) 35,039 42.830 TOTAL FUNDS CARJiIED FORWARD The no￿ forn) part of tI￿se financial statements Page 6 NARCOLEPSY UK GISTERED NUMBER: 07791M)71 STATEMENT OF FINANCIAL POSITION 31 DECEMBER 2020 31.12_20 Totsl fvnds 31.12.19 Totsl funds Uttrestricied nd Restricted fimd Notes FIXED ASSETS Tangible assets 421 421 CURRENT ASSETS Debiors Cath a( bank 12 7.620 7,620 6,988 38.330 26.172 32J75 58.547 45,318 CREDITORS Amounts falling due within one year 13 (2.780) (2.780) (10.279) NET CURRENT ASSETS TOTAL ASSETS LESS CURRENT LIABILITIES 23.813 32.375 56,188 35.039 NET ASSETS 23.813 FiINDS Unrestri¢ied filnds Restricted funds 14 23,813 14,039 TOTAL FUNDS 56.188 The charitable company is entided to exemptson from audit under Section 477 of the Companies Act 21MI6 for the year ended 31 December 2020. The members have not required the comparty io obtain an audit of its financial statements for the year ended 31 December 2020 in accordance with Seciion 476 of the Compank&% Act 21K16. The ttustees acknowledge their Eesponsibiiities for (a) ensuring that the charitsble company keeps acc4)uniiti8 Tecords that comply with Section$ 386 and 387 of th¢ Companies Act 2006 and preparing f￿anCIal statements which give a true and fair view of the sratr of affairs of the charitsble company as ai the end of each flnancial year and of irs surplus OT deficit for each financial year in accordance with the requirements of Sections 394 and 395 and which otherwise comply with the requirenwits of the Companies Aci 2006 relating io financial statements. so far as applicable to the charithble cornpany. Ib) These fthancial sthtements have been prepared in accordance with the Provisions applicabl¢ to charitabl¢ ¢ompanies subject to the small companies regime. The f￿ancial statements w¢re approved by the Board of Tnjstres and authorised for i￿le oll tl.-..fl.-Li........... andw¢r¢ signedon its behalfby: M M O'Neill- Trustee Th¢ notes fcffln part of these fu￿￿la1 stsiemenrs Page 7 NARCOLEPSY UK NOTES TO THE F￿ANCIAL STATEMENTS FOR THE YEAR EiYDED 31 DECEMBER 2020 STATEMENT OF COMPLIANCE Narcolepsy UK is a ¢haritsble company incorpornted in England. The register&1 office is '. Yew Tree House The Shnlbbery Church Street St Neots Cambridgeshire PE19 2BU The charitable company's financial statements have been prepared in compliance with Charities SORP {FRS 102) ￿ li applies io the financial statements for the year ended 31 December 2020. ACCOUNTING POLICIES BASIS of prtpariDg the finaDcial stxt¢meats The financ￿1 5taternents of th¢ ¢haritable company. which is a public benefit eniiry under FRS 102. have been prepated in accordance with th¢ Chariues SORP IFRS 102) 'Accouniing and Reporting by Charities.. Stsiement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Stsndard applicable iti the UK and Republic of Ireland (FRS 102) (effective l January 2019),, Financial Reporting Stsndard 102 'The Finat]cial Reporting Standard applicable in the UK and Republic of Ireland, and the Companies Aci 2006. The fllw1cl￿ statements have beert prwed u]￿r the historical ¢0 convention. Nor¢olepsy UK meets the defmilion of a public benefit ¢n¢ity wider FRS 102. The fllwicial statements are presented sterling (£). Income Income is recognised when the charity has entitletnent to th¢ fvnds. any perfonnan¢e condirions attachd to the item(s) of income have been meL it is probable that the income will be received and the amount Can be measured reliably. Income from goven)Tnent and otheT grants, wh¢ther 'capitsl' gTants or 'revenue' grants. is recognised when the charity has entirlement io the fimds. any perfornianrx wnditions attached to the granrs have been mei. li is probable that the inc¢)me will be received and the amount can ￿ measured reliably and is not deferred. For legacies. entiilement is taken as the &qrlier of the dale on which either. the charity is aware that probate has been granted. the estste has been fujalised and notification has teen made by the executorfs) to the Trust that a distribution will be made, or when a distribution is received from the ¢stsie. Re¢eipi of a legacy in whole or in , Is only considered probably when the arnount can be measured reliably and the ¢lJarity h&$ be¢D notified of the exe¢utorfs intefttion to rnakc a distribution. Interest receiyable Inieresi on fithds held on deFOSit is included when receivable and the aTllouDt can be In￿ured relaably by the charity. this is nornially upon notifl￿tion of the interesi paid orpayable by the baDk. Expendlture and irrecoverable v*t Expendimre is re￿gniSed once there is a legal or constrnctive obligation to rnake a payment to a third PaTty. it is probable thai settlement will be Tequired and the amount of the obligation can be Me￿ured reliably. Expenditure 1$ classified under the following activiry he&ls"ngs: - Costs of raising funds comprise the costs of their a550ciated support costs. - Expenditure on charitable activities includes the costs of conferences and fundrwing and their associatrd support costs. Irrecoverdbl¢ VAT is clwged as a cost against th¢ aciiviry for which the expenditure was incurred. Page 8 Continued... NARCOLEPSY UK TES TO THE FINANCIAL STATEMENTS- ¢ontioued FOR THE YEAR ENDED 31 DECEMBER 2020 ACCOUNTING POLICIES- ¢Otstinued Tangible fixed assets Depreciation is piovided at the following anrtual rat&q in order tt> WTite off each &