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 profts*oNI Imn￿N￿￿5 Spedallst He•lthureandAcademk Sdtnttsts In tr* IX UKPIfrX$ m155lon Is to ar￿an￿ the he•tth •nd •d¥ancknKeduc4tlfyi In PID •nd rd•ted subJett& D**plr4 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 ChwlVs*hns •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 T*a5 arqthred Pwthe Br1115h st￿e￿f￿ lrnrMrndofft7 In Oe¢ember 2022. Tr#s has resulted in theestsW15Ifflffit ofa netwwkfordlnkal ImrnunoloBVi the ASI Clnl¢•l lfflrnun￿OW 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 dlscipl**s, uHdln8diw Ih*s betweth dknlcal WaLlltlonusJTrJ b•5k sdthiists. It atso¢On￿Ms the eypertbe tsfthe BSI and VKPIN to 5tre1yt1￿ the1A￿te ofdnk•l Inmnurth in polky •nd th•wtrtharena to the lrnplct of¢Jur In a0*p￿tI￿101 th• ¢areof•itsTh*h UKPIN ha5 achlelod muth 51n¢e its fom1•t1￿ to brI￿t￿￿tr*r the dlnknl knmw*iiommunity. 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 upd*l￿and dwelopment ofclnical th•dlwosts and m•n•ymont of Immunodefideny Ilse•se5. Th15 *vr*T*III be p•s*l to the BSI-CIPN. lThfon Imrnunod¢nckno kn the wlderwotld. Th• OPIDS i￿rn ran ¥lrtv* tr*nlN sossions tosupport th• •cuedh•tlon process. Followk rvltsed si•ndards. Milnt•nwK• d th• UK PID r•*lry In I4￿1 2022 bec*ffl• Independert frorn UKPIN Mfh fvndkryob1•tr￿d Thts Is wffid•nt provbd•i R•8iitry Cw¢Mnatorto the r*tv. I)XPIN conllnva to •)ffor •n opptylU￿ty to and Klurttsts who •rn UKPIN members io lurther thelr kno¥Aed￿0f￿M0ry irnnwne defideMle& a￿￿15 helpsupwt pwlods trllnirrf In other •caden*or dlnkal centrts. olthese awan15 ha¥e b•en tr￿￿1•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* COm￿nIN￿ Il* ¢urranttrwte4 •nd lily p•stTrystees whDw¥ed thilr*th•yur we ltsted ¢n p¥t l& TheTrustees are reSpW￿lb1e for dhclI￿tr* acti¥hios and for marilyn￿1 ofth• •ffalrs ofthe Charirv, they actl¥•ty manw the •*s•tkn. hWe¢￿traCted P￿tsh 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 thmef￿th th•Ch￿r • ful lThtroduttbtsn tolether wlth the Nstwy ofthe Ch¥lty key Infrymth tlw to luffll th•trdyths u Thxt•e. expedencetoour*ctMtl4 th￿kY￿alL Rn•nd•l Porform•nc• IKorne lell 2021wlthout • UKPIN ffeetln& Thelhwl costs fortr• r¥slry b•fryelt b￿ffl* •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: S￿r￿j> £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 cont1rn￿I ￿￿kInd Sust*￿Ilty ofthe Charfty. We Idwrtlfy lculaied rtskswe need to tske to succeed. loppominl¢vl or neoatfvelthYe*l.The Charfty opvaies a fe8iSter kncryatkng stratel4 OP*dttonal and ¢ompll#nce dsks. which aro informed by the Charlrfsstiateiic obJe(Il¥e5. pvforn4rrt4 ¥obr•alour stskehth1ets. r•Iaiorythilr￿ffleftt and an•1Y￿ afthE e¥tern* wwlr(¥fftnt. Steerfry Commllteedeleiates dvttrday rrfF¥>u*lhiyftr fflan•ityrffittt+th• DIIe¢t￿. **o•re rosPM51ble for ldentlfW￿ and eVa*jati￿rts1S to •rea5 and aCtM￿e5 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 $4)port•n. The applle5 be51 vac11￿ W protrrt supp￿th￿ dala. r*¥ersells or sw•p It •nd enwr•s th•i communk•tson be thawd •t•tW libm. Th• Owlty tornmlts to feact to and In¥estlpt• imycornplknts Te¢el¥e¢ to le•rn frtyn fkniryth•yur. Ihe Ch•rlty fecel¥od no£￿9111n￿ •bout bts fun&rJhlryKtMt*k Futyr• pl The charlt•ble adl¥btle5 OIUKPIN hmleen ￿￿[￿r•￿t0th• 8SL The ￿• hMu••t•d th• OY Clknk•l Immun01a￿ ProlossloNI N•tw￿leS1<1FN). The TnJ$t￿S w• ￿sPo￿l￿e f¢* thtTNst••rf r•M ¥rdfinanrJal statements In •cewdanowiih appllcable ITh¥ and Unlted A¢¢ounfk* Stsnthrds (Lkntted Kk*dt)rn Gonoralty &•wt•OA((4untl pr￿￿e •nd l•lr tAe¥• ofthe slateolaffalts of tharliyand of ihe Intom• and •p4erthr•of th• Chwitykn tr ptrknd. In yeg¥kn8thes• I￿￿n￿lS1*teMthts. •re rwutrqd to: . obJeTre the rnrflK>ds and prI￿e% In acts￿ntI￿ and HeportlrqbyCharlile5: St•temeni ol Recgmm•nd•d Pr•tt*e appllr*e totharltles pfepatk¥ih* a¢coyMS In xcordan(Q Twlth th• RepMln8 Startthrd appliL4blÈ to the Urtted WKI Ae9uWKofiYoknd: and ' Sl*ewh•ther ap￿ble United Kln•lomArC￿n1I￿St1thrLts hm l>een lolo¥rnl. towiy mat•fial departures dlsdosed expl•lned 47 th•finand•l stat•Y*its: charity T*AH ￿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¢s￿￿￿ble1Orsaf￿ulrdkn1 ihèassets of the Charlty ind hEn Ea¢h of Tnjstees thil: Is unM¥ar•: •nd . theYnNtee has tsken ￿ stsps th•tltho*ttt+ •Tntsknordwtom*e hlrnseWfvr5elfwar• of•ny rde4•nt InfmdoA•Trd th•rtalthh thal the Ch*irfs kndoper •xamin•fIs*￿rt ofth•t kfvM•Ik￿. Ctsnpanbu Act XIXS. The Trustees irn for the miln*nance•nd trtyrfty ofcNpxate arrtlfffiand•l Inlornth Indud•d on the Chwlrfs wtbsite. L*51atlon In the unl￿ eo¥ernh¥the we￿rat￿￿ •nd dlssemln•th)n of Aon• Cullty Dkertor Independent Examlnerfs R•port to the Tntslees d the L•nlt•d KIft￿n 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. ra￿OnSibl•fOr1hl W•p￿tkIn ofthea¢counts Sn accNdaKewbth requtrernents olth•ConwlesArt 2006 satisfled Myselfiht th• Kcounts ol the not requlrnd to be wthed P*t 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 e￿m]n•t1(￿l hv4efrlh7￿l theDlrecllon$*wb￿th*C￿rttyC0Mnknund¥s•ttkn 145151{b)ofthe2011 to b•P￿r. i) 21 31 Ihe•¢counts do •ttfrtf*lth thoserecwd5.or other than rtqulrernent Ihat th• •c<￿TrU il¥* i hlrtAmyfAthIth kn bwt • nwtttr consldefed as of•n *￿e￿nderf 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 Ad1￿1& 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 2r*J6 relaihia to sm•ll ￿rnP￿d No rnqfflbm requked the comp•nytoobLylTh •n ollts xc(•Jrtts f•rtr*ye•r In 4ue# In ittord•nee*lth 476 ofth¢ Companles Thedliector5acknow18d8e thelr resp￿bIbIlity for rwtromenis of ts*Acl In ro5Prtt f•wrds for the ofKetyJN subjert to the snw1lufflp￿lu 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 fin￿la1 sialernents l polld the pre￿ration ofthe ststements•reas fdlm: The Iln•Th*l ststements arepwtwred on a underthehlslork* c05tcuwenll¢ modlfied to kn¢1￿le the rtt(erAtlon of Ibted hwestsmnts rneasured athlrvakn. wllchls corffi15tenl wilh prfor par. Thè flnanci￿ stateM￿ts ha¥e been propared In aCt¢¥th￿t￿1th thtstatement al St•ndard appllubl• In the Unl1￿ Klrydom •KI ftewbllrgf Irel*KI IFAS 1021 theCharlliosAd 201L The lI￿ted Prlmary Imrnunodelldvxy md*￿*{Tro￿lI￿I n*ets thedefv4tknd• pul* bel￿t entity undtr FAS 102. G•n•rnl Infwff4tl The Chartty Is a th•rftable comp•ny IrKOry￿rn1e￿ In E￿*￿1 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{ChrIty￿Athtr 10132SS1 ICthmp•ny nurnber 030059331 (Eryknnd and Wales11. The Pre￿a￿0ft olfinandal stateM￿ts requlresthe sue ofn ol•ath act￿lty. knty*n •s"suwl co$￿ Ind 5¥p￿rt 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 S*dion 11 olFRS 102 In rup•tt olllMncthl Iwrnmerts. I) HNndal as￿￿ 1¢ flnandèl In￿dIngtr￿ 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•trw*r¢d t• othw partyor ¢1 dewe retsired sf•me ST￿11￿1 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 wllh￿rt knpo5lryaddillf￿11 festrth& sh K blnk and cth In14fid Ind sh￿.t￿M • $I￿rt rn•turfty ofrhrw mrmths or les& 111 Fhwnthl labllues 8•skfin¥nthl l￿b￿￿e$. Indudl￿trade 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¥j￿ne$S lrnffl wpplln A￿a￿Trts payabkayedassilled as current Ilablllies rf payrnent ls the¥Athln oneywor le5> If ihey xe wuented as n¢kn¢yffent Wil¥tle& Fknanthl Il*lllt*sheld at arn(*tsed costwnyrlse 411 ¢redhtys ex¢ept sooal le￿Ity other tsxesand pro¥lylons. | Motes to the fin•ndal statem from a p•stebwtth•t wll wobabty regJll In thetrat¥fer of fvndsio • trdrd party and the jrnoynt due to settlE theoblIptk￿ on be meawred orexlm*d rehbty. Prry4l$i￿￿¢ •w*ff•d at the lue of th•expendtures e¥e¢ted io be requk¢d to oblytltyk Fmd •¢Muntlry d*at•d tr•th• Trustms for partkular purysoses**•e tholr us• r•rnaln5 * the dI￿•￿ft oftho Twstee& It15th•polkyolihe Trust••s to In fvnds. affl￿nts 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 avala￿e 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 exPw￿l1￿• 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 C￿ld￿nce 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 reM￿￿￿tIon.4￿mI AudWI f•munwathn.oth•r Brlllsh s￿￿ty lor Imrnunolrdy. DurlN fhe Ptr￿d ended 31 Oec•fftbtr 2021 * s•uetsrl•l feeto IncknJest•ff. offa and IT(osl$101£30m12021: £30JIIXn w•% trrftt* P41ttth So(*tyfor ImmuTh* to tre ty. minwmeffl per￿￿ forth•pr¥AS £NII1202L" £nln. Chwltytloes emplw stsff. No renurnornt1¢￿ rothttru*e5thrln8 th• Fxrlod to31 Decefflbew 20221202L' nty*l. Expmw tmllry thll (2021.. EnM)ThV• rtimbuned ts) nll IJu5t•os12020: nll • .D•blo 2021 VAT recovernble T•tsl 15 l Noleslothe flnandal ststen 2D22 2021 Trade cre4Ytois io i• fwids At31 nwry 2022 Isitird StholarandJon•tth Shwr¥d Awwds Totsl Ati Jw•ry 2022 Atji T•tal Funds to3vpportUXPlN mmbvs forgwknth traknlrylnathw •c•d¥￿ or dk*41 rent￿ to fufowth* kno*l•dpofprtmKy Ifflnwno | Not•S to the Ilnand•l stat￿•Thts fund5 nds Totsllunds Current •Ssets Current Ilablllues Totsl Funds 2021 fvnd5 Tothlfu eooo Current auets Current IlJblMtles Totsl Fyndi 197 zoi 25 176 In li Shw• Thecompny151kn1t•d tsyvw•nt•• •rAlihw•loM hm fiDtsec¥ltsl. Is Ilmsthd to£1. Thecomp•nyth controled ￿ •rdl ts • whalty (wned wbsldllryolthe •rftKh So(*tyfty Ifflnwmkw. lth•rfty r*trntlon number 104325SI and a Cryny Llrnlted by l&kv4nt••in¢orpty•ted kn the UK (COM￿n¥r￿lStmtIoTr numbff 03(m533). offi¢•1s lor•led •¢9 Appold Streei London. EC2A IAP. Th•flnandal stalen￿ts donot Indude • dlthufe oltrnnsKkns b•tseen the •rfUsh Society lor ImmunoloKy aThl UKPIN. A% • l(Q% ¢￿trOled sub51dbary undertak1￿ UKPIP4 b exempt IM the raqulroment Thue¥nr• nolurthor rel•t•d p•rtylJ•lS•¢tlons IlnaThcl•l ptrlod12021: nonek ITnMtees Chalr Drslisa Sa¥k Treasurer HMorary Settttsry Dr Ek4Nth Dr Llsa Tnulee M155J Edmty Tnuoee DiShu•yb Elkhahla Re5ts1 July 2022 TrJii•• Dr Klmbeth Tiuite* DrAlex Rlthter Trus1•• r R•¥tshankv&ryur Trysle¢ Dr￿$t￿ wtyth P•trlck Y¢x Ch•tr Trustee Tntsi•• P•ul H¥dhy Tntst•• prof*sl•n•l •d¥kn% ￿fik 14116 Co(knpur*reet London EC2V 6DL 17