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
ServI￿S 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 cirCumstan￿S 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 Inf0M￿tIoTr (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 un￿StriCted 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
Pharma￿Utical organisations with vested
Inte￿Sts 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 In￿rporated 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 Pro￿dureS
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
TA￿t•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¢&
M￿tsI[ShIp
Ibsurydncé
18$
144
144
Sub total
A4 Asset and Inv8Stmort
sé• tablo
Sub total
415
4fS
N•t offr•¢￿P￿fp•￿¢nts) .
AS Translers tthyen fund
A6 Cash fvrtds last y•ar ond
Cash funds thls ènd
21
29,973
CCXX R1 amjnts Issi
2011￿2025

Section B Staternent of assets and liabilities at the end of the period
Unrastri¢1od
funds
to nMff#¢£
Categories
Re8ttiGt•d
fvnds
D￿all5
£nd(Y￿n•nt
funfts
trJ n•*r•rt£
B1 Ca8h fund8
lo wr•vt£
Tot•1 fvnds
UnrB51rfd•d
Endv*m•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 tr￿tle
Synattsre
Print NaTr
Datg 01
ro
CXX R2 aCLWrf¥ ISS)
20110r2025