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2019-08-31-accounts

REGISTERED COMPANY NUMBER: N1617725 (Nortlterll IrelaThd) REGISTERED CHAWTY NUMBER: NIC102130 REPORT OF THE TRUSTEES AND UNAiJDITED FINAYCIAL STATEMENTS FOR THE YEAR ENDED 31 AUGUST 2019 FOR THE ULTRA RARE DISEASES. DISORDERS Af4D DISABILITIES FOUNDATION M.B.McGrady & Co Chartcred Accountants Sui[¢ ?B Cadogan House 322 Lisburn Road Belfast Co. Aniri]n BT9 6GH

THE ULTRA RARE DISEASES, DISORDERS AND DISABILITIES FOUNDATION COf4TENTS OF THE FIIIANCIAL STATEMENTS FOR THE YEAR ENDED 31 .4UGUST 2019 Page Reference and Administrative Details Report of the Trnstees IndependeDt Eiarnin¢r'$ Report StsttmeDt of Fillanci￿ ActiThities Balance Sheet Notes to the FiDAnci&l Statements 6 to 10 Detailed Statement of Finantixl Activities

THE ULTRA RARE DISEASES, DISORDERS AND DISABILITIES FOUNDA TION REFERENCE AND ADMINISTTL4TIVE DETAILS FOR THE YEAR EYDED 31 AUGL:ST 2019 TRUSTEES M Hoey THoey L Mcconnell HCS¢ott REGISTERED OFFICE Suite 2B Cadogan Hous¢ 322 Lisbum Road Belfast Co. Antrim BT9 6GH REGISTERED COMPANY NUMBER N1617725 (Northern Ireland) REGISTERED CHARITY NU￿sBER NIC102130 TNDEPENDENT EXAMIVER M.B.McCirady & Co ChaTieied AcLounlaiits Suite 2B Cadogian House 322 Lisburn Road Belfast Co. Antrim RT9 6GH

THE ULTRA RARE DISEASE& DISORDERS AND DISABILITIES FOUNDATIOF REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 AUGUST 2019 The trustees who are also directiyrs of the ¢hariry for the pu¢￿Se$ of the Companies Acr 2006. present their report with tlic financial statements of the ¢h3riry for the vear ended 31 August 2019. The irusiees have adopicd th¢ provi.4ion% of Accouniing and Reporting by ChaTiIics". StatemeDt of Recorntnended Practice &ppliLable tu chariiics PTepaTinb their accounts in accordance with the Financial Reponing Sthndard applicable in the UK and Republic of Ircland IFRS 1021 leffeetive l January 20151. OBJECTJ"ES AcrtVlTIES ObJeetlve5 and a1rn5 The aim of the charity is to be a ¢entre of supp)¢ adiryce & help for children,adults and their familie% who have been diagnosed with a rare disease or au ultsa Tare disease. The future of the Foundation Includes a dediLdted of volunteer5. counsellor's & medica] sraff_ Th¢ir aims arc high and with thc help of ￿nding and sponso￿hap and h￿draiSIng they hope ¢0 buy a large house that they can rLLrrJ into a hotne froin hotne, a place where the paren15 can bring their children to and a place of sanctuary for parienis with sp¢cial nceds, also a hom¢ where th¢ whol¢ family can go io for suppon and Understa￿dIng aud with your h¢lp they ¢aTh make this happen. FINANCIAL RE￿IE The resulis for the )'ear and the Charity's ¢nd of year position ar¢ shown in the atta¢h¢d a¢¢ounts. STRLCTL'RE, GONIRNANCE AND MANAGEMENT GO￿tr￿[nE documeni The charity 15 Controlled by its goi'crniiig document. a dccd of tnjsi, and ci)n%tiWl¢% a limitcd company, limit¢d by guarantee, os d¢fin¢d by th¢ Cornpanics Act 2UV6. Or%ani5ational structure Th¢ board ol'Trusices administers and holds the legal responsibility for the good management ol'the compdny. Approved by ord¢r of the board of trusiees on 28 August 2020 and signed on its behalf by.. T Hoey- Trustee

THE VLTRA RARE DISEASES, DISORDERS AND DISABILITIES FOUNDATION STATEMENT OF FIN￿NcIAL ACTIVITIES FOR THE YEAR ENDED 31 AtFGUST 2019 2019 Utkre5tricted nd 2018 Total funds Notes INCOME AND ENDOWMEYTS FROM Donations and legacies 6,831 11,234 EXPElll)ITLIiE ON Raising funds 8,133 10,065 NET INCOIMEI(EXPEND￿IREl {1 J021 1,169 RECONCILIATIO.Y OF FUNDS Tot81 funds brought forward 7.448 6.279 TOTAL FiFNDS CARRIED FORWARD 6.146 7,448 Thc notes forni part of these hnancial statements

THE ULTRA IIARE OISEASES, DISORDERS AND DISABILITIES FOUNDATION BALANCE SHEET 31 AUGUST2019 2019 Unrestricted fund 2018 Total funds Notes FIXED ASSETS TaDgible assets 5,308 6.184 CURRE.%T ASSETS C&sh ai bank 1,558 1,984 CREDITORS Atnounts faillng due withiti one year (720} 1720) YET CURRE*T ASSETS 838 1.264 TOTAL ASSETS LESS CURRENT LIABtLITIES 6,146 7.448 NET ASSETS 6.146 7,448 FUNDS Unrestricted fimd8 6,146 7,448 TOTAL FUNDS 6,146 7,448 The charitable company is entitled to exemption frorn audit llnder Seetson 477 of the Con3panies Aci 2006 for the year ended 31 Augusi 2019. The members have not required the company to obtain an audit of its financial stat¢m¢llts for ihe year ended 31 AUg￿￿t 2019 Èn accordallce Section 476 of the Companies Act 2006. The trustees acknowledge their responsibilities for (al Cnsuring that thc ¢haritabl¢ company keeps accounting records that ¢omply with Sections 386 and 387 of the Companies Act 2006 and preparing financial siatemcnts which givc a trnc and fair vi¢w of the %lale of affaiT5 of the charitable Company (IS at the end of each financial year and of lis surplus or deficit for each financial year in accordance with the rcquircmcnts of Scciions 394 and 395 and which othcTWi%C comply with the Tcquircment% of the CoTMpaiiies Act 2006 relating to financial Sthtemenis, so far as applicable to ihe charitablc company. Ib) These financial statements have been prepared sn accordance widi the proiiisions applicable to charirable conipanies subject to the small companies r¢gimc. The fiiiaTILial state￿ellts were approved by the Board of Trustee5 and authori5ed for issue 011 28 August 2020 and were signed on i(s behalf by.. T Hocy- Trusice The notes fomi part ol'ihese f1nancial siatements

THE ULTRA RARE DISEASES, DISORDERS AND DISABILITIES FOUNDATION I OTES TO THE FI.NANCIAL STATEMEYTS FOR THE YEAR ENDED 31 AUGUST 2019 ACCOUNTING POLICIES Basis of preparing the finantl81 Stste￿ents The financial statemenr% of ihe chariiable company. which 15 a public benefit entity under FRS 102, have been prepared in accordance with the Chariiics SORP IFRS 1021 'Accounting and Reporting by Charities.. Sthtement of Recommended Practice applicable tv LhaTitle5 prq)ating their aLLUUllts' in aLLOrd￿Le with the Financial Repi)rting SL2ndard applicable in the UK and Republic of Irclaiid IFRS 102) Icffcctive l January ?0151', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK RepubliL of Ireland. and the Companies Act 2006. The financial siatemenrs have been prepared under the historical Cost Lollvention. All income is reeogllised in the Statement of Financial Activtties once the charity has entitlement to the fund%, it is probable that the incom¢ will bc rcceivcd and the amount can be measured reliably. Eipenditure Liabiliiies are recognised as expenditure as soon as there is a legal or conslrnctive obligation Commitiing die chariry to thai expendimre. it is probable that a transfer of economic benefits will be reqllired in Settlement and the atnount of the obligation can b¢ mtrasured reliably. Expenditure is accounted for on an a¢crt￿lS basis and l)as been classifjcd under headings thai aggregate all c05t related to the category. Where costs cannot be directly attribuied io particular headings they have been allocat¢d lo a¢livitlCs on a basis consi5t¢nt with thc uso or resoutces. Tangible fixed assets Dcpicciation 15 proi'id¢d at thc following annual rdtes in order to write off each asset over its estimated usefijl Taxation The thaTity is exempt from corporation tax on i15 charitable a¢tiviti¢s. Fund accountlng Unrestricted funds can be used in accordance with the charitable obje¢tives At the discretion of the trllSi¢¢S. Resiricied funds can only be used for particular rcstricicd purposcs within th¢ objccts of th¢ Charity. Restrictions arise when specified by the donor (Ir when funds ore raised for pafficular restricied purposes. Further explanation of the nawre and purpose of each fund 15 included in the notes to the flnancial statem¢nis. continued...

THE ULTRA RARE DISEASES, DISORDERS AND DISABILITIES FOL'NDATION YOTES TO THE FIf4AF*CIAL STATEMENTS- continued FOR THE YEAR ENDED 31 AUGUST 2019 RAISING FUNDS Raising donations and leg%cies 2019 2018 Fundraising Costs Support costs 999 7,134 10,065 8,133 10,065 NET IYCOMEI(EXPENDITUREI Net incomellexpenditur¢l is stated after charginOlcreditirtg)'. 2019 2018 Depreciation- owM¢d a5S¢t5 876 906 TRUSTEES. REMUNERATION AND BEYEFITS There were no trustees, remuneration or other ben¢fits for the year ended 31 August 2019 nor for the year ended 31 August 2018. Tru5tee5' expenses There were no trusttts, expens¢s paid for the y￿r ended 31 August 2019 nor for rhe year ended 31 August 2018. COilfPARATtVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES Unrestrlcted fund INCOME AND ENDOWMENTS FROM Donation5 ￿)d legacie5 11,234 EXPENDITURE OI¥ Raising funds 10,065 r4ET INCOME 1,169 RECONCILIATION OF FUNDS Total fuTrd5 brought forward 6,279 TOTAL FUNDS CARRIED FORWARD 7,448 coniinued...

THE ULTRA RARE DISEASES. DISORDERS AND DISABILITIES FOUNDATION YOTES TO THE FIf4ANCIAL STATEMENTS- continued FOR THEYEAR EYDED31 AUGUST 2019 TANGIBLE FIXED ASSETS Flxtures and ritting5 Office Building Motor 'ehlcles Computer L'qulpment Totals COST Al I September 2018 and 31 August 2019 3,634 382 3.995 8,279 DEPRECIATION At I Sepmber 2018 Charge for y¢8r 229 77 1,598 799 268 2.095 876 Ar31 Augusi2019 306 2,397 268 2.971 FET BOOK V.4LUE At31 Augusi2019 3,634 76 1,598 5.108 Ai 31 Augusi 2018 3.634 153 2.397 6,1114 CREDITORS: AMOUNTS FALLtNG DUE WtTHtN ONE YEAR 2019 2018 Ac¢ountan¢y 720 720 MOVEMENT FUNDS Net moi'ement in fund5 At 3118119 At 119118 Lnrestri£ted fund5 Jeneral fund 7,448 (1,302) &146 TOTAL FUNDS 7,448 {1,302) 6,140 Nct movemeni in fi]nds, incllldcd in the above are as follows.. Incoming resources Resource5 expended Movement In funds Unre$trl¢ttd funds General fund 6.831 {8,1331 {1.302) TOTAL FUNDS 6.831 {8,1.131 {1,3021 continued...

THE ULTRA RARE DISEASES. DISORDERS AND DISABILITIES FOUNDATION NOTES TO THE FINA,NCIAL STATEMEYfs-contlnued FOR THE YEAR ENDED 31 AUGUST 2019 MOVEMENT IN FbNDS- contlnued Comp&ratives for tnoi'emeDt iTh funds Net moverncni in funds At 3118118 At 119117 UnTestri¢ted fund$ Gener￿ fund 6,279 1,169 7,448 TOTAL FUNDS 6,279 1.169 7,448 Comparative net tu0ve￿et1l in fimds. included ill the above are a5 follows.. Ineomlng resource5 Resources expended Movement IN fund5 Unrestrleied funds General fuDd 11.234 110,0651 1,169 TOTAL FUNDS 11,234 (10,0651 1,169 A ¢urreni yw 12 rnonths and prioryear 12 month5 combined position is as follows.. Net movement in funds At 3118119 At 119117 Unrests4¢t￿ futkd5 General fund 6.279 11331 6.146 TOTAL FUNDS 6,279 11331 6,146 A currcnt year 12 months and prior year 12 month5 ¢OTllbined net movement in funds, included in thc above are as follows.. Incoming rL'50urc¥s Resource5 expended Moi'emertt in fund5 Unrestrfcted fuDds General fund 18.065 118,1981 11331 TOTAL FUNDS 18,065 (18.19R) {133) continued...

THE ULTRA RARE DISEASES, DISORDERS AND DISABILITIES FOUNDATION NOTES TO THE FI￿ANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 AUGUST 2019 RELATED PARTY DISCLOSURES There were no relai¢d party trdnsaciions for the year ended 31 Augllsi 2019. VOLUNTARY INCOME Voluntsry Income includes £4,177 12018.. £8,623) received from trustees. Terry 2nd MauTeen Hoey. to cover expendiwre incurred by the charity. 10

THE ULTRA RARE DISEASES, DISORDERS AND DISABILITIES FOUNDATIOF4 DETAILED STATEMEYT OF FifiAYCIAL ACTtVITIES FOR THE YEAR ENDED 31 AUGUST 2019 3118119 311N118 INCOME AND ENDOWMENTS Donatlolls and legacies t)onations 6,831 11.234 TotAI incoming resourees 6,831 11,234 EXPENDITURE Raising donatlons legacie5 Fundraisin8 Costs 999 Support costs Manag¢ment Insuritnce Moior Telcphonc Posiage and sthtionery Adverti52n8 Sundries Offjce & coniput¢r Memberbhip fee Fixtures and fjtiings Moior vehicles Computer ¢quipm¢ni 223 205 1,413 1,760 312 400 1,083 976 954 778 408 287 4,576 140 76 799 76 799 6,271 9,025 Flllance Bank charges 34 107 Goi'ernance cost5 Ac¢ouniancy and legal fees 829 933 Total resources expended 8,133 10,065 Net {expendlture)Ilncome IIJ021 1.169 Thi5 page does noi fom part of the sta￿tOry fInancial stat¢m¢nts

.M.B. McGRADY&rCc T￿ awthlad.fowJthion.(Iig.uk> CC.. Seamus mCLern￿ anus..KILLenwn.gJ)Jbme8radv.¢o.uk> 5ubjtcl: ?019.4ccw)ts Dit- ?02￿.28. 13.(Y)..I I AtirhDntr Rtre Thstses. Di50rdcrs & DisBbililies-Chariiies re5M>rt2D19.PDF Hi Maureen & ferry. I hope you are both well. I have attached a PDF copy of The Ultra Rare Diseases, Disorders and Disabilities Foundation 2019 accounts for your approval. If you are happy with the accounts, please print, sign and scan them back to us for submission by close of play today. If you have any queries please do not hesitate to get in touch. rind regards, Naomi Naomi Canwron B M<Gr•dy & Co cov1￿19 Coro,'iavitus We have laken ihe relevant precautionary steps io insure the safety of staff and clients and if ViSlliTrg our offices please follow the onsite safety guidance. Wher¢ ssible. we encourage clients to continue to engage with us remotely bul we appreciate this is not always tM)ssible. Covid-19 Importanl Notice: As a practice, we are Cott￿rentl0usjY following govemmeiit gFuidelin¢s and our offices are now open by appointment to the public. Print Time- 0310912020. 16'.31:44

rryho¢y - (212) Offlce$ In: Downpatrl¢k: 52 St. Pats1£ks Avenue DOWNPATRICK BT30 6DS 2B Cadc4an H£￿$t 322 L15burn Rojd BELFAW 6GH Newtown•rds: 27 Francts street NEwfowNARDS BT23 7DW t. 028 4461 6321 Belfast.. t. 028 9031 6950 t. 028 9181 4557 Thls efflall Is confldenyal and may te prt¥ileged,. r( Is foF the use or the narr)ed re￿￿ent only. Ef you have retrlved It In error please do nrt o)py or dlsdose ccrtents to any person or tJ)dyi and delete It from your computsr Sy5tern. N B McGrady & Co Is aut￿￿se￿ to carry Investrnert e￿tnesS In the ROI and re9ullited for a range or Investment business In the UK. The firm Is ￿lste￿d to carry on 4udf( ￿rk by the Ir6tyDrte d (trorte￿ Acctyjnrants In Ireland. Dlrertors. MBT McGrady FCA, CcN)èill McGTrJy U Seamus •ldern(m FC MB McGrady & Co Is the tra¢JlThJ narre of pathrn￿e Ltd. a coM￿Y rEglstered In Plorthem IreIar￿. reoistration number NI 601538. Our Downpathck offlce Is wr reg(sterta *Jdress. Print Time.. 0310912020, 16..31:44