CHARITY COMMISSION FOR ENGLAND AND WALES Trustees, Annual Report for the period From 2023 1 January 2023 Period start date To Period •nd date 31 December Charity name: Action FCS Charity registration number 1165873 Objectives and Activities Summary of the purposes of the charity as set OLrt in its goveming document Para 1.17 The objects of the CIO are to relieve sickness and preserve and protect good heaMh of persons suffering from Familial Chylomicronaemia Syndrome (FCSI and related CE*nditsons by.. raising awareness of FCS and related conditions,. 2. educating patients, mediGal personn81 and the public in general about FCS; 3. supporting people with FCS and those affected by rt to live a full, h8althy and integrated Itfe., advocating for access to excellent care and new medicines for all atients with FCS The charity endeavours to promote leaming and provide infomation on th8 condition of FCS on tts website and social media plaffoms for patients, their families and medical professionals. Summary of the main activities in relation to those purposes for the public benefit, in particular, the activities, projects or ServIS identified in the accounts. Para 1.17 armt 1.19 Workshops and presentations to talk about FCS are attended and delivered to promote awareness of the condition. Statement confiming whether the trustees have had regard to the guidance issued by the Chartty Commission on public benefft Para 1.18 In the period to 31 December 2024, the trustees have had regard to the guidan issued by the Chartty Commission at all times.
Additional infomiation (optional) You ma choose to include further statements where relevant al)out: SORP rele Policy on grant maknng Para 1.38 Policy on SOGial investment including program related investment ParB 1.38 Contribution made by volunteers Para 1.38 Other Achlevements and Perforniance Summary ofthe main achievements of the charity, identifying the drfFeren the charity's work has made to the cirCumstanS of its benefi¢iaries and any bwder benefrts to society as a whole. During the year we continued to support and network with organisations with interest in FCS and associated conditions. Para 120 Workshops and conferen$ were attended for infonnation sharing and advocacy wcKk. We continued to manage the facebook group FCS Communty, and ran the annual FCS Awareness Day, Additional Inf0MtIoTr (optlonal) You ma choose to include further statements where relevant about Achievements against objectives set dr¥ 1.41 Perfomance of fundraising activities against obj'ectives set Para 1.41 Investment perfoThanc8 against objectives Par8 1.41 Other
Financial Review Review of the charity's financial position at the end of the period Para 1.21 At the end of the period, cash funds in the Bank amounted to £29, 309. Receipts during the year totalled £200, whilst payments amounted to £415, showing a small net defiat for 2024 of £215. Statement explaining the policy for holding reserves stating why they are hekl Parn 1.22 Currently, the Charity does not have any of its unStriCted funds in the Bank set aside as a reserve and no policy exists. Amount of reseThes held Reasons for holding zero reserves Para 1.22 None All cash funds are unrestricted and sufficient to ¢over operations and associated risks for more than one Para 1.22 ear. Details of fund materially in deficit Explanation of any uncertainties about the charity continuing as a going oncem Para 124 P8¥a 123 Additional Inforniation (optionall You ma choose to include further statements where relevant about: The Charity's main sources of incom8 are through other organisations and groups seeking knowledge and advice on Familial Chylomicroneamia Syndrome. The Charity also receives a small number of donations. The chanty's principal sources of funds (including any fundraising) Para 1.47 Investment policy and objectives including any social investment policy adopted Para 1.46 - No significant funding or regular income for the Chartty. A description of the princtpal risks facing the charity P•ra 1.46 -In the long temi. the Chartty is very deFendent on grant funding from PharmaUtical organisations with vested InteSts in bringing potential new drugs to the market for the treatment of FCS and associated condttions. No grant funding of this nature is currenlly being received. - Challenges for Trustee recrurlm8nt and retention Other
Structure, Governance and Management Description of charity's trusts.. Type of goveming document Para 1.2S Constitutron How is the charity constituted? Para 1.25 Charitable Inrporated Organisation "ated Trustee seleclion methods including delails of any constitutional provisions e.g. election to post or name of any person or body entitled to appoirrt one or more twstees Para 1.25 Appointed by the Trustee Board Addftlonal infomiatlon {oplional) You ma choose to indude further statements where relevant about.. Trustees are selected having regard to the skills and experience needed to run a small organisation, along with having understanding andlor experiencA8 of FCS or Similar conditions. Policies and ProdureS adopted for the induction and training of trustees Parn 1.51 All new Trustees are provided with a copy of the constitution and past packs of Board papers, whi¢h include policies and procedures approved by the Board. The charity is run by a volunteer board of truslees, the chair of which (and founder) is the main operational executive. The Treasurer is a qualified Chartered Company Secretary. The charity's organisational structure and any wider netsvork with which th8 charity works Para 1.51 The Charity works with lated networks.. Heart UK, Diabetics UK. Genetic Alliance, Rare Disease UK, RareConne¢t. Relationship with any lated parties Parn 1.51 Other
Roference and Administrative details Charil name Other name the chari uses Registered charity number Action FCS 1165873 Charity's principal address 36 Gaskell St, London SW4 6NS Names of the charlty trustees who manage tho charity Trustoo nam• Office lif any) Datss actsd Ifnot for whol• Naffle of perdon lor bodyl entitl•d olnt tN6ts• rfan Jill Prawer Chair Helen Aderin Pat Wade Treasurer Finian Nicholas Patrick Day-Lewis Co orate trustees - names of the directors at the date the re Dlr•¢tor nam• rtwasa roved Name of trustees holding title to property belonging to the chartty TAt•0 nam• D•th• acted If not forwhtsle
Funds held as custodian trustees on behalf of others Description of the assets held in this capacity Name and objects of the charity on whose behalf the assets are held and how this falls within the custodian charity's objects Details of arrangements for safe custody and segregation of such assets from the charity's own assets Additlonal Infomiatlon (optional) Names and addresses of advl$ers (Optional Infomiatlon) of advl8er Name Address Name of chlof èxecutive or names of senior staff members (Optional inforniation} Exemptions from disclosure Reason for non4isdosure of ke rsonnel details Other o tional inforniation Declarations The trustses declarn that they hav• approv•d tho trusteos, report above. Signed on hall of the charlty's trustees Slgnatur8($) Full name($) Posltion (eg Secretary, Chair. etc) PA-rKI L 114 tsJRQF Date 17 9125
I CHARITY COMMISSION I FOR ENfjLAND ANO WALES Receipts and payments accounts CC16a For the perioj To Section A Receipts and payments Unrnsthcted Rostri¢tod Endowment Totsl fund• L•¥iy••r A1 R•c•i AR) As*et an (S table). A3Pa men¢& MtsI[ShIp Ibsurydncé 18$ 144 144 Sub total A4 Asset and Inv8Stmort sé• tablo Sub total 415 4fS N•t offr•¢Pfp•¢nts) . AS Translers tthyen fund A6 Cash fvrtds last y•ar ond Cash funds thls ènd 21 29,973 CCXX R1 amjnts Issi 20112025
Section B Staternent of assets and liabilities at the end of the period Unrastri¢1od funds to nMff#¢£ Categories Re8ttiGt•d fvnds Dall5 £nd(Yn•nt funfts trJ n•r•rt£ B1 Ca8h fund8 lo wr•vt£ Tot•1 fvnds UnrB51rfd•d Endvm•nt fund¥ trj nw•r•rt£ 83 Investhi*nt us•ts B4 AM•t• r•talngd for th• charity's own u#e Dètails B8 UabS1Stl b8haKof•M the trtle Synattsre Print NaTr Datg 01 ro CXX R2 aCLWrf¥ ISS) 20110r2025