I CHARITY COMMISSION
FOR ENGLAND AND WALES
Trustees, Annual Report for the period
1 January 2023
P•rfod stsrt dat• To
Period ond date
From
2023
31 D￿ernber
Charity name: A¢lJon FCS
Charity rnglstration number. 1165873
Objectives and Activities
Summary of the purposes of
the charity as set out in its
governing document
Parn 1.17
The objects of the CIO are to r81i8ve
sickness and preserve and protect good
health of persons suffering from Familial
Chylomicronaemia Syndrome (FCS) and
related condtti'ons by:
raising awareness of FCS and related
conditions",
2. educating patients, medical personnel
and the public in general about FCS.,
3. supporting people with FCS and those
affected by it to live a full, healthy and
integrated Itfe..
advocating for access to excellent care and
new medI￿neS for all
ients with FCS
The charity endeavours to promote leaming
and provkde infomiation on the condition of
FCS on its Vlebsite and swal media
platfomis for patients, their families and
medical professionals.
Summary of the main
activities in relation to those
purp¢)ses for the public
benefrt, in particular, the
aGtivrties, projets or
servi￿5 identified in the
accounts.
Par¥ 1.17 #￿j
1.19
Workshops and presentations to talk about
FCS are attended and delivered to promote
awareness of the ¢ondtiion.
Statement confiming
whether the trustees have
had regard to the guidance
issued by the Chaiity
Commission on pU￿1C
benefit
P4r• 1.18
In the period to 31 December 2023, the
trustees have had regard to the guidance
issued by the Charity Commission at all

Addltlonal inforniation (optlonal)
You ma
ch005e to include further statements wPEre relevant about:
Policy on grant ffla￿ng
pa￿ 1.38
Policy on social investment
including program related
investment
Parn 1.38
Contribution made by
volunteers
Paro 1.38
Other
Achlevements and Performance
Summary of the main
achièvements of the charity,
identrfying th8 dffteren￿ the
charity'$ work has made to
the circumstances of its
beneficiaries and any wider
beneffts to socÈ8ty as a
whole.
During the year we continued to support
and network with organisations with
interest in FCS and associated
conditions.
Para 1.20
Workshops and conferen￿5 were
attended for infomiation sharing and
Wle continued to manage the facebook
group FCS Communty. and ran tha annual
FCS Awareness Day,
Addltlonal Inforniatlon (optlonal)
You ma
choose to include fijrther statements where relevant about:
Achievements against
objectives set
Para 1.41
Performanc* of fundraising
activities against objectives
set
P•ro 1.41
Investment perforniance
against objectives
Parn 1.41

Financial Review
Review of the charity's
financial position at the end
of the period
P•ra 121
At the end of the peTrod, cash funds in the
Bank amounted to £29, 524. Receipts
during the year totalled £339, whilst
payments amounted to £787, showing a
small net deficit for 2023 of £448.
statement explaining the
policy for holding reserves
stating why they are held
Para 122
.Currentty, the Charity does not have any of
its unrestricted fijnds in the Bank set aside
as a reseNe and no policy exists.
Amount of reserves held
Reasons for holding zero
reserves
Parn 1.22
Para 1.22
All cash funds are unrestricted and
sufficient to cover operations and
assouated risks for more than one
ear.
Details of fund materially in
deficit
Explanation of any
uncertainties about the
harity continuing as a going
¢oncem
Pgrn 1.24
Para 1.23
AddftSonal Infommuon (optlonal)
You ma
choose to indude furtper statements where felevant aboLrt.'
The Charity's main sources of income are
through other organisations and groups
seeking knovledge arKI advice on Familial
Chylomicroneamia Syndrome. The Charity
also receives a small numter of donations.
The chaiity's principal
sour￿$ of funds
(including any
fundraising)
Para 1.47
Investment policy and
objectives including any
social investment poli
adopted
Parn 1.46
- No signfficant funding or regular income
for the Charity
In the long t8nn, the Charity is very
dependent on grant funding from
Pharnaceutical organisations with vested
interests in bringing potential new dwgs to
the market for the treatment of FCS and
associated conditions. No grant funding of
this nature is currently being received.
A description of the
principal risks facing the
Parn 1.46
- Challenges for Trustee recruitment and
retention
Other

Structure, Governance and Management
Description of charity's
trusts..
Type of goveming document
Para 1.25
Constitution
How is the charity
constitLrted?
ie g dnip,-or,
as50CI3:,
Trustee selection methods
including details of any
constitutional provisions e.g.
election to post or name of
any person or body entitled
to appoint one or more
trustees
Parn 1.25
Charitable Incorporated Organisation
ra 1.25
Appointed by the Trustee Board
Addltlonal inforniation (optional)
You ma
choose to include further ststements where relevant about:
Trustees are selected having regard to
the S￿lIS and experienc* needed to run a
small organisation, along with having
urKlerstanding andlor experience of FCS
or similar conditions.
Policies and Frocedures
adopted for the induction
and training of trustee6
P•ra 1.51
All new Trustees are provided with a
copy of the constitution and past pa¢ks of
Board papers, which include policies and
procedures approved by the Board.
The charity is run by a volunteèr board of
trustees, the chair of which {and founder) is
the main operational executive. The
Treasurer is a qualified Chartered
Compary Secretary.
The charity's organisational
structure and any y￿der
ne￿Ork with bvhich the
chanty y￿rkS
1.51
The Chanty works with related netrNorks'.
Heart UK, Diabetics UK, Genetic Alliance.
Rare Disease UK, Rareconnect.
Relationship ¥￿th any
related parties
Parn 1.51
other
Reference and Administratlve detalls
Chari
name
Action FCS

Other name the Cha '
uses
Registered charty numter
1165873
Charity's principal address
36 Gaskell St.
London
SW4 6NS
Nameg of the charlty trustees who manage the charity
Trn8ts• n•m•
Offi¢• Olany)
Name of pernon lor body) ¥tW¥•d
Ént tru8ts•
an
Jill Prawer
Chair
Helen Aderin
Pat Wade
Treasurer
Flnian Nicholas
Patrick Day-Lewis
rate truste85 - names of the directors at the date the
Director nam•
vRsa
Name of trustees holding title to belonging to the charity
Tn*ts• n4m•

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
fals wtthin the custodian
Chanty's objects
Details of arrangements for
safe custody and
segregation of such assets
from the d)arrty's IMI
assets
Addltlonal Inforniatlon (opUonal)
Names and addro88es of advi••rs (Optlonal Infomiatlon)
of advls•r
Name
Addr•
Name of chlef exe¢utlve or nam￿ of senlor staff members (Optional inforniatlon)
Exemptions from disclosure
Rea50n for non4isdosure of ke
nnel details
Other o
tional information
Declarations
The trustees declare that thoy have approved the tru$t•es' report above.
sign￿ on behalf of th• charlty'$ trustees
Slgnature(s)
ICI¢X
L/&a
Po8ltlon (eg Secretary,
Ch•ir. etc)
Date

CHARITY COMMISSION
FOR E14GLAND ANO WALES
Receipts and payments accounts
CC16a
Forth• pwiod
To
Section A Receipts and payments
fvnds
Totsl fvnd¥
L•ty••v
Al Rec•1
tknn*n*
1CII
14
100
14
AR)
tablo).
Tot•1 tK•lpts
Sub total
A4 A8s•t and In¥estm•nt
g9• tabl•
Sub total
11
C•8h f•mds thls yè•r
CCXX R1 ISSI
23ffj9f2024

Section B Statement of assets and liabilities at the end of the period
Unrestrlcted
R8Strf¢tèd
Endowrnent
Categorles
B1 fA•h fw
2•J24
Tot•1 c•sh luftds
fund•
fvnds
to n••r•st£
De-21.'5
CurMntY•l
Cufftrtwiu•
Ohiai.¢
B4 A•80ts rntsln•d forth•
¢harfty'• own
BS U•blllll•
Sijnaturn
PAnl Name
Dat• of
rcval
2310W2024