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 | |||
– 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 | ||