| Trustees' Annual Report | Trustees' Annual Report | Trustees' Annual Report | Trustees' Annual Report | Trustees' Annual Report | for theperiod | for theperiod | for theperiod | |
|---|---|---|---|---|---|---|---|---|
| From | Period start date | To | Period end date | |||||
| 02 | apr | 2023 | 01 | Apr | 2024 |
Section A Reference and administration details
Charity name Wales Orphan and Rare Lung Disease
Other names charity is known by
WORLD
Registered charity number (if any) 1177810
Charity's principal address Newton House
Llandyfan
Postcode 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 (ifany) |
|---|---|---|---|---|
| Keir Lewis | Chair | 2018 | ||
| GaryStone | Trustee | 2023- | ||
| Joseph Annandale | Treasurer | 2018- | ||
| Lesleydale | Trustee | 2022- | ||
| Raydale | Trustee | 2022- | ||
| Sylvia Evans | Trustee | 2017- | ||
| Graham Evans | Trustee | 2017- | ||
| Gethin James | Trustee | 2023- | ||
| Kyle Jenkins | Webmaster | 2018- | ||
| Marie James | Trustee | 2021- | ||
Names of the trustees for the charity, if any, (for example, any custodian trustees)
Name Dates acted if not for whole year
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Names and addresses of advisers (Optional information)
| Type of adviser | Name Address |
Name Address |
|---|---|---|
| Name of chief executive or names of senior staff members (Optional information) |
Section B Structure, governance and management
Description of the charity’s trusts
Constitution Type of governing document (eg. trust deed, constitution) Charitable Incorporated Organisation: Model constitution for a CIO whose How the charity is constituted only voting members are its charity trustees (eg. trust, association, company) The founding 5 Trustees were made up of family, friends and colleagues Trustee selection methods who had an interest in establishing the charity Subsequent Trustees have (eg. appointed by, elected by) joined after an expression of interest following our meetings. If in future we require more or new trustees then we will make this known publicly at our meetings and via social media – if we have more interest than vacancies then the Trustees would hold a vote.
Additional governance issues (Optional information)
Foundation Model Constitution (Charity Commission) You may choose to include additional information, where relevant, about:
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policies and procedures adopted for the induction and training of trustees;
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the charity’s organisational structure and any wider network with which the charity works;
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relationship with any related parties;
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trustees’ consideration of major risks and the system and procedures to manage them.
Section C Objectives and activities
Summary of the objects of the charity set out in its governing document
-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
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including signposting to other relevant bodies.
-Engage respiratory specialists to refer other patients to the forum. -Support research into rare lung diseases applying due diligence and transparency to the awarding and governance of any grant awards. We continue to try to promote awareness within the community, particularly in those living with a rare lung condition or their family members as well as the local health professional community. Specific activities include:
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Attending Senedd Rare Diseases Day
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2 charity quiz/curry nights Purchase of 4 I-PRO2 respiratory muscle trainers for NHS respiratory physiotherapist currently trialling on several patients
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Raising awareness and promoting the charity by increasing activity on social media:
Summary of the main activities undertaken for the o Webpage https://www.joinusatworld.com public benefit in relation to o Facebook and X to help promote the charity and its work these objects (include within More video stories from patients documenting their illness, diagnosis this section the statutory and impact have been filmed and have uploaded to the website declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)
Additional details of objectives and activities (Optional information)
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The Charitable Incorporated Organisation (CIO) has power to do anything which is calculated to further its objects or is conducive or incidental to doing so. In particular, the CIO has power to:
You may choose to include further statements, where relevant, about:
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policy on grantmaking;
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policy programme related investment;
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contribution made by volunteers.
(1) employ and remunerate such staff as are necessary for carrying out the work of the CIO. The CIO may employ or remunerate a charity trustee only to the extent that it is permitted to do so by clause 6 of this document and provided it complies with the conditions of that clause. (2) deposit or invest funds, employ a professional fund-manager and arrange for the investments or other property of the CIO to be held in the name of a nominee, in the same manner and subject to the same conditions as the trustees of a trust are permitted to do by the Trustee Act 2000.
No charity trustee or connected person may;
- (a) Buy or receive any goods or services from the CIO on terms preferential to those applicable to members of the public; (b) Sell goods, services or any interest in land to the CIO; (c) Be employed by, or receive any remuneration from the CIO; (d) Receive any other financial benefit from the CIO;
Section D Achievements and performance
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Section D Achievements and performance
Summary of the main achievements of the charity during the year
See above
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Section E Financial review
Brief statement of the charity’s policy on reserves
We have no specific policy on reserves but only aim to fundraise to maintain up to £5,000 in our current account – adequate funds to undertake activities relating to our aims and objectives. We’ve openly discussed this at our meetings.
Details of any funds materially Not applicable in deficit
Further financial review details (Optional information)
You may choose to include additional information, where relevant about:
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the charity’s principal sources of funds (including any fundraising);
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how expenditure has supported the key objectives of the charity;
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investment policy and objectives including any ethical investment policy adopted.
We held two ‘Curry & Quiz night’ to raise funds and had 2-3 donations from charity sponsorship (London Marathon)
Our expenditure relates to supporting our meetings, maintaining our website and purchasing advertising materials. Our income and expenditure activities were presented at our Annual General Meeting on 4/04/2024
We have not invested any funds and have no intention to make any investments in the future.
Our annual turnover remains £5-7000
Section F Other optional information
Section G Declaration
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
Signature(s) Full name(s) Joseph Alexander Annandale Position (eg Secretary, Chair, Treasurer etc) Date 24.05.2024
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