UK PIN Advan¢ln9 C•r• In Primary Immunodeficiency Annual Report 2022
| Trustees, Report Forthe pvknd ended 31 Decernber 2021 What w• do and wly11 matlws The Kin8th Prlm4ry Ifflrnunodefi IUKHPII b the proftsoNI ImnN5 Spedallst He•lthureandAcademk Sdtnttsts In tr IX UKPIfrX$ m155lon Is to aran the he•tth •nd •d¥ancknKeduc4tlfyi In PID •nd rd•ted subJett& Dplr4 d¢1 wldelnu olMttir4card•)wi Mndwds b•sed UP best pnc(Ice Jtudlnts Th? Tru51ee5(onltrrn thty have rtl¢frul ro th• Ch¥lty publk bthefit when l•wlw ChwlVshns •rtl oblttil plw4nlwfuhw• th•annu•l *n. Our d•tsi Cmrity rqtsir•Ww nurnb•r 1164466 Rqlsterod address ECUW
Our slr•trfl¢ oblertltMS Followkn8dlKwlornavEr the lart ar5. iMPIN Ta5 arqthred Pwthe Br1115h stef lrnrMrndofft7 In Oe¢ember 2022. Tr#s has resulted in theestsW15Ifflffit ofa netwwkfordlnkal ImrnunoloBVi the ASI Clnl¢•l lfflrnunOW Prrles5W NerthlBS1-OPNI. Th• 951QPN 411 fulty rryttentall •spe¢ts of knrnunokwwKtke kn itre UK. del¥erbettor support for the ImrnunoloKytornmunityto neiw<k en84e e•th other across miny dlscipls, uHdln8diw Ihs betweth dknlcal WaLlltlonusJTrJ b•5k sdthiists. It atso¢OnMs the eypertbe tsfthe BSI and VKPIN to 5tre1yt1 the1Ate ofdnk•l Inmnurth in polky •nd th•wtrtharena to the lrnplct of¢Jur In a0ptI101 th• ¢areof•itsThh UKPIN ha5 achlelod muth 51n¢e its fom1•t1 to brIttrr the dlnknl knmwiiommunity. Throu thts rner8er. Ihe BSIQPI4 trjpeto an e¥n S¢rtyy lordkdclan4 hEknre wofeulonI5 ¥rfl sdent15ts to •rnl sh•re best wart UKPIN on the updland dwelopment ofclnical th•dlwosts and m•n•ymont of Immunodefideny Ilse•se5. Th15 vrTIII be p•sl to the BSI-CIPN. lThfon Imrnunod¢nckno kn the wlderwotld. Th• OPIDS irn ran ¥lrtv trnlN sossions tosupport th• •cuedh•tlon process. Followk rvltsed si•ndards. Milnt•nwK• d th• UK PID r•lry In I41 2022 becffl• Independert frorn UKPIN Mfh fvndkryob1•trd Thts Is wffid•nt provbd•i R•8iitry Cw¢Mnatorto the rtv. I)XPIN conllnva to •)ffor •n opptylUty to and Klurttsts who •rn UKPIN members io lurther thelr kno¥Aed0fM0ry irnnwne defideMle& a15 helpsupwt pwlods trllnirrf In other •cadenor dlnkal centrts. olthese awan15 ha¥e b•en tr1•d lo the BSI followkn8 the xquwtlon in December 2021 2022was a noTrmethni year for UKPIM. Althty4h iheknawiral ffieetlrq ofthe BSI4PN took *ce
structu Governance and Min4•m•rt The (thth15 reol#ered asa IChxltyNnkn 1164466)arnl andWaesa5 omparly. Ihniied by8u•rnnt (Company Nmber 092739831. ft tras no sh•rtuMal •NI the Ilablity ollts rn•rnbe Is MThdied io a sum not ex(eeth El. doornt)5 the MemLYandym WL BoAvd of Trust• Ind Tfeasurw art4$0 ¢omparry thectcKslLY the purposesoftr COmnIN Il ¢urranttrwte4 •nd lily p•stTrystees whDw¥ed thilrth•yur we ltsted ¢n p¥t l& TheTrustees are reSpWlb1e for dhclItr acti¥hios and for marilyn1 ofth• •ffalrs ofthe Charirv, they actl¥•ty manw the •s•tkn. hWe¢traCted Ptsh Sodety lor ImTrwrKJlowiopro¥ldes•tyrt•rf•¢ to thp Clwlty. outslde the Meorlr4 comffdttee wbi kn be wtsd¥od èythe Vustees •8r¢th8or doctyonk vote byall Iruste As p•rt ofth InthKIkn wor85. 4XbNI s(ffte thmefth th•Chr • ful lThtroduttbtsn tolether wlth the Nstwy ofthe Ch¥lty key Infrymth tlw to luffll th•trdyths u Thxt•e. expedencetoourctMtl4 thkYalL Rn•nd•l Porform•nc• IKorne lell 2021wlthout • UKPIN ffeetln& Thelhwl costs fortr• r¥slry b•fryelt bffl •nd•#y Independent frorn the UKPIN •r. Tht rmln com thlsye•r•s th• tr•nJfqrrf UIPIN fvndstothe BSI n¥2rytrln December. Thli wshedth•d•lldt fortheywrto £172k12021: Srj> £42k). At 31 DEcembw 1021 froe re5v¥e5StryJd •t£4k12 £172klTh1515 cOnsh ts be suffldent to emr Ixitstandlnl Ilaknllii•sas al theywend.
Good r15k fflanoymwrt Is fvrKlan tothe cont1rnI kInd SustIlty ofthe Charfty. We Idwrtlfy lculaied rtskswe need to tske to succeed. loppominl¢vl or neoatfvelthYel.The Charfty opvaies a fe8iSter kncryatkng stratel4 OPdttonal and ¢ompll#nce dsks. which aro informed by the Charlrfsstiateiic obJe(Il¥e5. pvforn4rrt4 ¥obr•alour stskehth1ets. r•Iaiorythilrffleftt and an•1Y afthE e¥tern wwlr(¥fftnt. Steerfry Commllteedeleiates dvttrday rrfF¥>ulhiyftr fflan•ityrffittt+th• DIIe¢t. o•re rosPM51ble for ldentlfW and eVajatirts1S to •rea5 and aCtMe5 approwlate ntr( mlwon rnonStN ChJrStyapplles best ¢t In the tone ollts conmnk•Oofis and the accuracy of bts d•t• th minlm15e the pressures on $4)port•n. The applle5 be51 vac11 W protrrt suppth dala. r¥ersells or sw•p It •nd enwr•s th•i communk•tson be thawd •t•tW libm. Th• Owlty tornmlts to feact to and In¥estlpt• imycornplknts Te¢el¥e¢ to le•rn frtyn fkniryth•yur. Ihe Ch•rlty fecel¥od no£9111n •bout bts fun&rJhlryKtMtk Futyr• pl The charlt•ble adl¥btle5 OIUKPIN hmleen [r•t0th• 8SL The • hMu••t•d th• OY Clknk•l Immun01a ProlossloNI N•twleS1<1FN). The TnJ$tS w• sPole f¢ thtTNst••rf r•M ¥rdfinanrJal statements In •cewdanowiih appllcable ITh¥ and Unlted A¢¢ounfk Stsnthrds (Lkntted Kkdt)rn Gonoralty &•wt•OA((4untl pre •nd l•lr tAe¥• ofthe slateolaffalts of tharliyand of ihe Intom• and •p4erthr•of th• Chwitykn tr ptrknd. In yeg¥kn8thes• InlS1teMthts. •re rwutrqd to: . obJeTre the rnrflK>ds and prIe% In actsntI and HeportlrqbyCharlile5: St•temeni ol Recgmm•nd•d Pr•tte appllre totharltles pfepatk¥ih a¢coyMS In xcordan(Q Twlth th• RepMln8 Startthrd appliL4blÈ to the Urtted WKI Ae9uWKofiYoknd: and ' Slewh•ther apble United Kln•lomArCn1ISt1thrLts hm l>een lolo¥rnl. towiy mat•fial departures dlsdosed expl•lned 47 th•finand•l stat•Yits: charity TAH n11nY• in operntton.
•iy time the financAI wltlon ofthe th¥lty •xI to•Jwrethat finand& smern com vAth th• Cry3nles Act 2(X. They are 1150 r¢sble1Orsafulrdkn1 ihèassets of the Charlty ind hEn Ea¢h of Tnjstees thil: Is unM¥ar•: •nd . theYnNtee has tsken stsps th•tlthottt+ •Tntsknordwtome hlrnseWfvr5elfwar• of•ny rde4•nt InfmdoA•Trd th•rtalthh thal the Chirfs kndoper •xamin•fIsrt ofth•t kfvM•Ik. Ctsnpanbu Act XIXS. The Trustees irn for the milnnance•nd trtyrfty ofcNpxate arrtlfffiand•l Inlornth Indud•d on the Chwlrfs wtbsite. L*51atlon In the unl eo¥ernh¥the werat •nd dlssemln•th)n of Aon• Cullty Dkertor
Independent Examlnerfs R•port to the Tntslees d the L•nlt•d KIftn Prlmary lrnrnunodelldenry Het4vork Ilhe Ctynparfl I rewt ta the dwlty Irwtee5 on nry exaTrdn•(kn 01 th• a(c•Jnts ot tht fty the pwknd emled 31 December 2022. raOnSibl•fOr1hl W•ptkIn ofthea¢counts Sn accNdaKewbth requtrernents olth•ConwlesArt 2006 satisfled Myselfiht th• Kcounts ol the not requlrnd to be wthed Pt 16 of the 20CIS Aei and •re dlolPJe lor Independent e¥Thnaiioty I In ruped of ny exarnknth ofyour th•rtrfs •tcounts as arrled out under sectlon 145 ol the Cmriiies Act 2011 lihe 2011 Act). tr• c•ffykni oui my em]n•t1(l hv4efrlh7l theDlrecllon$wbthCrttyC0Mnknund¥s•ttkn 145151{b)ofthe2011 to b•Pr. i) 21 31 Ihe•¢counts do •ttfrtflth thoserecwd5.or other than rtqulrernent Ihat th• •c<TrU il¥ i hlrtAmyfAthIth kn bwt • nwtttr consldefed as of•n enderf ex•mknath)n: 41 I no ¢orKemi •rrtl h•% eom• •cr¢ss no other nwttffis In wlth the mn¥narbm w whkh •ttentlon shwld be th15 rew( to •rth • wopv of the •¢o)unts to be J.A LL Ndl O•t•: 27 April 2023
Statement of Flnanclal Actl¥ltles Period lo 311)ffember 2022 T•)tsl Totsl 2021 funds funds Donatlom Charitable atMiek' Membershlp T4XI Incom• 55 221 Ad11& on: Ch•rft•W••¢thh Guldance Membershlp bjiry t089 171 175 Totsl wendlbjre 227 179 14) 11721 Fvnds brov8ht forna*d 172 176 fvnds carrnd forwwd 176 The notes On P4e5 10 tu 17 IDrm gart olthme lln•ndalAèknwrts
Balan Sheet 31 Deomber 2022 Tthl Total X121 Debtors Cth at and In h•nd 129 147 Cr•dttors: •mountshNk¥ dut wItNn one Fund5 Gtner•l fund5 Rutrlcied lunds Totsl 13 172 176 Forthefjn•ndil ye•r In iU•Sllon th• ertithd 10 •wthiwtsiufiderseLIkn 477 olthe Comp•Dle5 Alt 2rJ6 relaihia to sm•ll rnPd No rnqfflbm requked the comp•nytoobLylTh •n ollts xc(•Jrtts f•rtrye•r In 4ue# In ittord•neelth 476 ofth¢ Companles Thedliector5acknow18d8e thelr respbIbIlity for rwtromenis of tsAcl In ro5Prtt f•wrds for the ofKetyJN subjert to the snw1lufflplu rtylffle. -oy/3[as •nd- ed On itsbehallbr. Aona Cull•v Ihe nol•s pwsloto 17 fwffl of thes•ltrond•l #•t•Mnts
| Note5 to the finla1 sialernents l polld the preration ofthe ststements•reas fdlm: The Iln•Thl ststements arepwtwred on a underthehlslork c05tcuwenll¢ modlfied to kn¢1le the rtt(erAtlon of Ibted hwestsmnts rneasured athlrvakn. wllchls corffi15tenl wilh prfor par. Thè flnanci stateMts ha¥e been propared In aCt¢¥tht1th thtstatement al St•ndard appllubl• In the Unl1 Klrydom •KI ftewbllrgf IrelKI IFAS 1021 theCharlliosAd 201L The lIted Prlmary Imrnunodelldvxy md{TrolII nets thedefv4tknd• pul belt entity undtr FAS 102. G•n•rnl Infwff4tl The Chartty Is a th•rftable comp•ny IrKOryrn1e In E1 Wales Icornyny numbtr092739831 •nd bj i thlrlty r¢81sttt¢d In £14nd and Wales ltharllv numbtr 11644661The charl rqkt•red addrem h9Appold Str••i. ior•on EC2A2AP. In 2022 1¢ be(•nea whth sub51dl¥v ofthe Brltlsh Sodety for Immunoloy, • th•rll•ble•ry{ChrItyAthtr 10132SS1 ICthmp•ny nurnber 030059331 (Eryknnd and Wales11. The Prea0ft olfinandal stateMts requlresthe sue of<ert (thk•l arf(wnik¥ e5tknAw It also requlros manaymwtto ewdselts th• w•5$01apptyIry the Ch¥lty ac£wnil polldes. th the appllutloA ofthe •¢¢ouniky polde4 7ftta ar• requlrtd to rnaklUty estlmates and assurnpdon5 •bout the carrylwvalye olass•ts •rKI 1•bMI¢S x• not T•4dlly appr•nt from other Thèerflrnite5 and aoumptl¢Yf&•re basod on h15ttylr •yrfence and oiher faaors that ar•con to be rdertnt Aciu¥ fwlts lrnm the •Sllm•i•& utlmaiw are r•£o8nLfed In the ptrlod In wNth th• estkn•t¢ l¥ redxdll th• r•¥tslon oray •lfeasth•t perlod. or h) ih•pwlod of Tth4sbon•rkl IUl the affeded turrentand fure riod5. In th•vlEW 01tySte¢S no assuffl0lcTth•kn •lledl assets or Illbllltles at the bal•nce sheet thteare Ilkely to radtln • m•terW alusbwnt to thelr Golw TheTrustee5 have asse55ed whher the of the8oln8wnEem a55umpYm15•pyoprf•te in of¢n•year frryn thedlts of apwg¥al olthesellr4rKlal si•t4m Followln8 mer8er wlththe PAlt15h Sorl•ty for tsvDuThA(w{8SII In l)e¢ernbw2021 th•dwkv tr•nsfeffed its ch¥ltalJl• a5f0ts to thEBSL Thth¥llylw rwawmdfundsta
| Notes to the fl•Mndal ststem be leIVed ènd Iheamountollncorne reCd¥abcèn bemeasured rellabty. #xome ofthecharfty wheffj applkl4 Induded net of V4ueAdded Ta IVAn and Is alknrated toihe perlod to It relths. rryIn¥for¥ffd th•t p•rt ofthelneth•fdatq ltyre acctyJn Expwdlluv• U•WllilEs •re rn¢oAnlMd as soon thve ts • W t¥tt)AstdtydQn uffirnitllthCrIty to th ewpendlturi r< is NatsIe that stttltmerf wil be •fl the anUnt of obllptlon c•n e mSUre rbty. Expendlwre IS on •n acolS 4aty1$ IKurrrt IrKIusrd• ofVAT. whl¢h camot b•Mr4Ared. ofo¥erall dlreciion and admln15tr•>n ol•ath actlty. kntyn •s"suwl co$ Ind 5¥prt ttAtsalso Indude ernm costy whkh comwtse orpnlsatltyul and ¢¢vnpllincewiih conslitutlon•l ststuwfotylknnenty Tr alllxatlan ofsuppNt 8o¥erninr• tasts Is•nalys¢dln notes S •nd & IlnaAthI IMlrum•nts Thecharlty httthos to •dopl Sdion 11 olFRS 102 In rup•tt olllMncthl Iwrnmerts. I) HNndal as 1¢ flnandèl IndIngtr Ind b b11¢0& •re lftltt r•(oyAs•d •1 tTrrwKllon ¥Alue and suwuentty measwed atamQrtlÉ casL OtherfinanJ•l •55•ts. bl subx•nil•lly •1 th• rew¥ dthe•ssd w•trwr¢d t• othw partyor ¢1 dewe retsired sf•me ST111 rls15 •nd rew•rds oftr•n•rsNp. ofii sei has been trnnsfeffed to anotherparty the w•ctkal ablltyto un4oteraifv xell ihe asset to•n unrtl•ted thltd p•rry wllhrt knpo5lryaddillf11 festrth& sh K blnk and cth In14fid Ind sh.tM • $Irt rn•turfty ofrhrw mrmths or les& 111 Fhwnthl labllues 8•skfin¥nthl lbe$. Indudltrade ott•et •t traruclk>n Ce. Trade payables are oblyiknns to ply for or seThicesthat hm be auwlrtd lft th• ¢>rdln•ry course of l¥jne$S lrnffl wpplln AaTrts payabkayedassilled as current Ilablllies rf payrnent ls the¥Athln oneywor le5> If ihey xe wuented as n¢kn¢yffent Wil¥tle& Fknanthl Illlltsheld at arn(*tsed costwnyrlse 411 ¢redhtys ex¢ept sooal leIty other tsxesand pro¥lylons.
| Motes to the fin•ndal statem from a p•stebwtth•t wll wobabty regJll In thetrat¥fer of fvndsio • trdrd party and the jrnoynt due to settlE theoblIptk on be meawred orexlmd rehbty. Prry4l$i¢ •wff•d at the lue of th•expendtures e¥e¢ted io be requk¢d to oblytltyk Fmd •¢Muntlry dat•d tr•th• Trustms for partkular purysoses•e tholr us• r•rnaln5 * the dI•ft oftho Twstee& It15th•polkyolihe Trust••s to In fvnds. afflnts whith In thelr IW•n¢ c•n h to liNe¢he thwt.tarni •ffe£ts ofhKome ¥olatlUty,' and retakn loiwem 1Tr4esimMtfvndstoynern Mrfficleni In¢ryre to meet cuml and fvture Èv•tknn •etlbilies •fthe Chartty. Ilestritted funds •reth05e lund5 avalae to ihecharlty rtstrkted toa spedft purposely ¥e sybl•ct to p•rtlcul4r donor wsed condltlan& Further Infornwiion In th• r•5w¥es seuim of th• Tnoiees. iewL 20 Totsl 2021 Total Fyhds Don•tlo Tot¥1 45 2021 T•l•l Funth £wo Total Fund5 funds Totsl
l Notes ta the finandil statem T•l•l exPwl1• Totsl Funds CA41d•fi¢• Member5hlp Trarthr to BSI Trt In 175 179 Djfe Support 2022 Tolal M•mbwthlp Support •1 foNM' x)zi Acrountsntyleos Profe51Fon•l fwj ret•rf•i fees TOMI Alkutlon ofswpm toth•fRI*¥I&. Total Cldnce MernberslAp 47 49 Toi•l 179
l Notes to th• flTranc statements 2021 r•rnuTrw4tlon- •y¢lt Audltsls 1emunwa1k-Other Total Thts ts st•tedaft•r Total Z022 Totsl 2021 Audl>ei reMtIon.4mI AudWI f•munwathn.oth•r Brlllsh sty lor Imrnunolrdy. DurlN fhe Ptrd ended 31 Oec•fftbtr 2021 * s•uetsrl•l feeto IncknJest•ff. offa and IT(osl$101£30m12021: £30JIIXn w•% trrftt P41ttth So(tyfor ImmuTh to tre ty. minwmeffl per forth•pr¥AS £NII1202L" £nln. Chwltytloes emplw stsff. No renurnornt1¢ rothttrue5thrln8 th• Fxrlod to31 Decefflbew 20221202L' ntyl. Expmw tmllry thll (2021.. EnM)ThV• rtimbuned ts) nll IJu5t•os12020: nll • .D•blo 2021 VAT recovernble T•tsl 15
l Noleslothe flnandal ststen 2D22 2021 Trade cre4Ytois io i• fwids At31 nwry 2022 Isitird StholarandJon•tth Shwr¥d Awwds Totsl Ati Jw•ry 2022 Atji T•tal Funds to3vpportUXPlN mmbvs forgwknth traknlrylnathw •c•d¥ or dk41 rent to fufowth kno*l•dpofprtmKy Ifflnwno
| Not•S to the Ilnand•l stat•Thts fund5 nds Totsllunds Current •Ssets Current Ilablllues Totsl Funds 2021 fvnd5 Tothlfu eooo Current auets Current IlJblMtles Totsl Fyndi 197 zoi 25 176 In li Shw• Thecompny151kn1t•d tsyvw•nt•• •rAlihw•loM hm fiDtsec¥ltsl. Is Ilmsthd to£1. Thecomp•nyth controled •rdl ts • whalty (wned wbsldllryolthe •rftKh So(tyfty Ifflnwmkw. lth•rfty rtrntlon number 104325SI and a Cryny Llrnlted by l&kv4nt••in¢orpty•ted kn the UK (COMn¥rlStmtIoTr numbff 03(m533). offi¢•1s lor•led •¢9 Appold Streei London. EC2A IAP. Th•flnandal stalents donot Indude • dlthufe oltrnnsKkns b•tseen the •rfUsh Society lor ImmunoloKy aThl UKPIN. A% • l(Q% ¢trOled sub51dbary undertak1 UKPIP4 b exempt IM the raqulroment Thue¥nr• nolurthor rel•t•d p•rtylJ•lS•¢tlons IlnaThcl•l ptrlod12021: nonek
ITnMtees Chalr Drslisa Sa¥k Treasurer HMorary Settttsry Dr Ek4Nth Dr Llsa Tnulee M155J Edmty Tnuoee DiShu•yb Elkhahla Re5ts1 July 2022 TrJii•• Dr Klmbeth Tiuite DrAlex Rlthter Trus1•• r R•¥tshankv&ryur Trysle¢ Dr$t wtyth P•trlck Y¢x Ch•tr Trustee Tntsi•• P•ul H¥dhy Tntst•• profsl•n•l •d¥kn% fik 14116 Co(knpur*reet London EC2V 6DL 17