## **Trustees’ Annual Report for the period**
**From 1[st] April 2024 To 31[st] March 2025**
## **Charity name: Wales Orphan and Rare Lung Disease (WORLD)**
## **Charity registration number: 1177810**
## **Objectives and Activities**
||SORP reference||
|---|---|---|
|Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|•
Promote the awareness and
understanding of rare lung diseases
in West Wales
•
Provide a forum for patients and
carers to meet and share
experiences.
•
Offer emotional and educational
support to patients and their families
including signposting to other
relevant bodies.|
|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|It has been difficult to engage enough
people to attend in-person forums following
COVID. The charity has worked hard to gain
more presence online by information sharing
across WORLD social media platforms.|
|Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|Yes our Trustees have been given the
guidance Charitable purposes and public
benefit-GOV.UK and we take this into
consideration when making decisions.|
## **Additional information (optional)** You may choose to include further statements where relevant about:
||SORP reference||
|---|---|---|
|Policy on grant making|Para 1.38|Not applicable at this time.|
|Policy on social investment
including program related
investment|Para 1.38|Not applicable at this time.|
|Contribution made by|Para 1.38|The Trustees give their time to organise and
deliver our fund-raising events. They also
promote the Charity online by posting on|
|volunteers||social media.
We also have supporters of the Charity that
give of their time to help raise awareness
and sell tickets for our fundraising events.|
|---|---|---|
|Other|||
## **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|The Charity continues to provide support,
encouragement and information to people
with rare lung disease online through the
website and social media platforms.
We remain committed to holding in-person
forums in the future and are exploring ways
in which we can engage with more people in
the next 12-18 months to make these events
financially viable.|
|**Additional information (optional)**
You may choose to include further statements|**Additional information (optional)**
You may choose to include further statements|where relevant about:|
|---|---|---|
|Achievements against
objectives set|Para 1.41|We are promoting the awareness and
understanding of rare lung diseases in West
Wales and hope to deploy new ways of
doing this in the future.
Whilst we have struggled to get enough
people to hold in-person forums as we did
pre-COVID. We do have an online forum
that is a closed group run by one of the
Trustees for patients and carers to talk share
experiences.
Again, we are using our social media
platforms to offer emotional and educational
support to patients and their families
including signposting to other relevant
bodies.|
|Performance of fundraising
activities against objectives
set|Para 1.41|Our fundraising opportunities enable our
charity to remain solvent and achieve its
aims and objectives.|
|Investment performance
against objectives|Para 1.41|Not Applicable|
Other
## **Financial Review**
|**Financial Review**|||
|---|---|---|
|Review of the charity’s
financial position at the end
of the period|Para 1.21|Our fundraising events keep the charity
solvent and allow us to plan for future
expenditure to support our aims and
objectives.|
|Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|We have no specific policy on reserves but
aim to fundraise to maintain up to £5,000 in
our current account to allow us adequate
funds to undertake activities relating to our
aims and objectives. This has been openly
discussed at our meetings.|
|Amount of reserves held|Para 1.22|£5,000|
|Reasons for holding zero
reserves|Para 1.22|Not Applicable|
|Details of fund materially in
deficit|Para 1.24|Not applicable|
|Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|Not Applicable|
## **Additional information (optional)**
You may choose to include further statements where relevant about:
|The charity’s principal
sources of funds (including
any fundraising)|Para 1.47|Ad hoc donations and our annual Curry &
Quiz night.|
|---|---|---|
|Investment policy and
objectives including any
social investment policy
adopted|Para 1.46|We do not have a specific investment policy
as it is not applicable. But would refer to the
Internal Charity Financial controls (Internal
financial controls for charities - GOV.UK)|
|A description of the principal
risks facing the charity|Para 1.46|Ensuring our Charity is reaching the people
that need us.
Engaging beneficiaries has become
challenging, and to hold in-person forums we
need sufficient numbers to make it financially
viable.|
|Other|||
## **Structure, Governance and Management**
|Description of charity’s
trusts:|||
|---|---|---|
|Type of governing document
(trust deed, royal charter)|Para 1.25|Constitution|
|How is the charity
constituted?
(e.g unincorporated
association, CIO)|Para 1.25|Charitable Incorporated Organisation: Model
constitution for a CIO whose only voting
members are its charity trustees.|
|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|Trustee selection is via the Board of
Trustees.|
|**Additional information (optional)**
You may choose to include further statements||where relevant about:|
|Policies and procedures
adopted for the induction and
training of trustees|Para 1.51|Directed to the Charity Commission website|
|The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|None|
|Relationship with any related
parties|Para 1.51|None|
|Other|||
## **Reference and Administrative details**
|Charity name|Wales Orphan and Rare Lung Disease|
|---|---|
|Other name the charity uses|WORLD|
|Registered charity number|1177810|
|Charity’s principal address|Maes Y Barcud
Llandyfan
SA18 2UD|
|||
**Names of the charity trustees who manage the charity**
|1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year**|**Name of person (or body) entitled**
**to appoint trustee (if any)**|
|---|---|---|---|---|
||Keir Lewis|Chair|||
||Joe Annadale|Treasurer|||
||Sylvia Evans|Trustee|||
||Graham Evans|Trustee|||
||RayDale|Trustee|||
||LesleyDale|Trustee|||
||Marie James|Trustee|||
||GaryStone|Trustee|||
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– Corporate trustees names of the directors at the date the report was approved
**Director name**
Name of trustees holding title to property belonging to the charity
**Trustee name Dates acted if not for whole year**
## **Funds held as custodian trustees on behalf of others**
Description of the assets Not applicable held in this capacity Name and objects of the Not applicable charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for Not applicable safe custody and segregation of such assets from the charity’s own assets
## **Additional information (optional)**
## **Names and addresses of advisers (Optional information)**
**Type of Name Address adviser**
**Name of chief executive or names of senior staff members (Optional information)**
## **Exemptions from disclosure**
Reason for non-disclosure of key personnel details
## **Other optional information**
## **Declarations**
**The trustees declare that they have approved the trustees’ report above.**
**Signed on behalf of the charity’s trustees**
|**Signature(s)**
**Full name(s)**
**Position (eg Secretary,**
**Chair, etc)**
**Date**|||
|---|---|---|
||Michelle Dunning||
||
Chair (as of 1stNovember 2025)||
||31/01/26||
||31/01/26||
WORLD – Wales Orphan and Rare Lung Disease Registered charity 1177810
Financial summary for WORLD for financial year April 2024 to end March 2025
|**INCOME**||**BALANCE**||**EXPENDITURE**|
|---|---|---|---|---|
|||**7076.69**|||
|16.04.24 Donation Wirral
Minis|200|**7276.69**|||
|||**7258.69**|18|24.4.24 Just Giving|
|||**7048.69**|210|26.5.24 CIAOWEB|
|||**7030.69**|18|28.5.24 Just Giving|
|||**7012.69**|18|25.6.24 Just Giving|
|||**6994.69**|18|25.7.24 Just Giving|
|||**6976.69**|18|27.8.24 Just Giving|
|||**6906.13**|70.56|7.9.24 Microsoft subscription|
|||**6888.13**|18|25.9.24 Just Giving|
|||**6870.13**|18|25.10.24 Just Giving|
|28.10.24 Donation for
Quiz night|50|**6920.13**|||
|14.11.24 Money raised
Curry Quiz Night|534|**7454.13**|||
|||**7436.13**|18|25.11.24 Just Giving|
|11.12.24 Just Giving|90.49|**7526.62**|||
|16.12.24 Just Giving|305.78|**7832.40**|||
|23.12.24 Just Giving|43.54|**7875.94**|||
|||**7857.94**|18|27.12.24 Just Giving|
|07.01.25 Just Giving|205.16|**8063.10**|||
|13.01.25 Just Giving|348.74|**8411.84**|||
|||**8393.84**|18|27.11.25 Just Giving|
|03.02.25 Just Giving|4.60|**8398.44**|||
|||**8380.44**|18|25.02.25 Just Giving|
|||**8362.44**|18|24.03.25 Just Giving|
||||||