## **Trustees’ Annual Report for the period**
**Period start date:** 01 January 2024 **Period end date:** 31 December 2024
**Charity name:** A Rare Cause
**Charity registration number:** 1198461
## **Objectives and Activities**
|**Objectives and Activities**|||
|---|---|---|
||SORP
reference||
|Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|The Objects of the CIO are the
advancement of health and the
saving of lives in relation to the global
rare disease community in particular
by providing information and
resources to raise knowledge and
increase awareness.|
|Summary of the main activities
in relation to those purposes for
the public benefit, in particular,
the activities, projects or
services identified in the
accounts.|Para 1.17 and
1.19|ARC was only able to establish a
currency account because we could
not find a UK bank willing to allow us
to open an account with them.|
|Statement confirming whether
the trustees have had regard to
the guidance issued by the
Charity Commission on public
benefit|Para 1.18|The trustees confirm they have had
regard to the guidance issued by the
Charity Commission.|
## **Additional information**
||SORP
reference||
|---|---|---|
|Policy on grant making|Para 1.38|Not applicable|
|Policy on social investment including program related investment-Para 1.38|||
|Contribution made by
volunteers|Para 1.38|The CIO currently has two volunteers: one
serving as the Chief Community Impact
Officer (CCIO) and another as the
Operational Lead, although the latter
position has been inactive due to a lack of
funding. These roles are dedicated to
advancing the ARC's strategy, formulating
and upholding policies, and engaging with
potential donors now that a bank account
has been established. The CCIO remains|
committed to working pro bono in the absence of financial support.
## **Achievements and Performance**
||SORP
reference||
|---|---|---|
|Summary of the main
achievements of the charity,
identifying the difference the
charity’s work has made to
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.|Para 1.20|Despite lacking funding, the charity
remains committed to supporting various
projects in Low- and Middle-Income
Countries (LMIC), particularly in Sub-
Saharan Africa. During the reporting year,
the Africa Roadmap project continued to
gain traction, aiding families impacted by
rare diseases in the target nations. The
Chief Charity Impact Officer (CCIO)
successfully presented at several
international meetings to enhance the
charity's visibility. Additionally, this project
showcased a poster at an international
conference, and a publication is currently in
the works.|
## **Additional information**
|Achievements against
objectives set|Para 1.41|N/A|
|---|---|---|
|Performance of fundraising
activities against objectives
set|Para 1.41|N/A|
|Investment performance
against objectives|Para 1.41|N/A|
|Other|||
## **Financial Review**
|**Financial Review**|||
|---|---|---|
|Review of the charity’s
financial position at the end
of the period|Para 1.21|£120|
|Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|None|
|Amount of reserves held|Para 1.22|None|
|Reasons for holding zero
reserves|Para 1.22|No activity or employees|
|Details of fund materially in
deficit|Para 1.24|None|
|Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|N/A|
## **Additional information**
|The charity’s principal
sources of funds (including
any fundraising)|Para 1.47|**None**|
|---|---|---|
|Investment policy and
objectives including any
social investment policy
adopted|Para 1.46||
|A description of the principal
risks facing the charity|Para 1.46||
|Other|||
## **Structure, Governance and Management**
|**Description of charity’s**
**trusts:**|||
|---|---|---|
|Type of governing document|Para 1.25|Foundation CIO Constitution|
|How is the charity
constituted?|Para 1.25|CIO|
|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|Para 1.25|Appointment of charity trustees
1. Apart from the first charity trustees,
every trustee must be appointed for
a term of three years by a resolution
passed at a properly convened
meeting of the charity trustees.
2. In selecting individuals for
appointment as charity trustees, the
charity trustees must have regard to
the skills, knowledge and
experience needed for the effective
administration of the CIO.|
|**Additional information**|||
|Policies and procedures
adopted for the induction
and training of trustees|Para 1.51||
|Thecharity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|The Board of Trustees ensures effective
governance while the Chief Clinical
Information Officer (CCIO) actively
promotes the charity and undertakes
necessary tasks. The charity collaborates
with various patient organisations,
academic institutions, and healthcare
professionals throughout Sub-Saharan
Africa.|
|Relationship with any
related parties|Para 1.51|FYMCA Medical Ltd, the parent company,
continues to provide support to the
charitable arm through network
development and specialised expertise.|
|**Reference and Administrative details**|||
|Charity name|A Rare Cause||
|Other name the charity uses|ARC||
|Registered charity number|1198461||
|Charity’sprincipal address|6 The Green, Burley in Wharfedale, Ilkley, LS29 7FF||
||**Trustee name**|**Office (if any)**|**Dates acted if not for**
**whole year**|**Name of person (or body)**
**entitled to appoint trustee**
**(if any)**|
|---|---|---|---|---|
|1|Dumebi Oderinde|Chair|||
|2|TiffanyWong|Secretary|||
|3|Amaka Offiah||||
|4|Linda Ebosie||Starting from
9/29/2025||
## **Funds held as custodian trustees on behalf of others**
|Description of the assets
held in this capacity|N/A|
|---|---|
|Name and objects of the
charity on whose behalf the
assets are held and how this
fall within the custodian
charity’s objects|N/A|
|Details of arrangements for
safe custody and
segregation of such assets
from the charity’s own
assets|N/A|
## **Declaration**
|Full name|Dumebi Oderinde|
|---|---|
|Position|Chair|
|Signature||
|Date|23/10/2025|