**To** ## **Trustees' Annual Report for the period** Period start date Period end date 01 01 2022 03 03 Year 2023 **From** ## Section A Reference and administration details **Charity name** Wales Orphan and Rare Lung Disease **Other names charity is known by Registered charity number (if any)** 1177810 WORLD **Charity's principal address** Newton House Llandyfan Ammanford **Postcode SA18 2UD** **Names of the charity trustees who manage the charity** |1
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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|2017-ongoing|| ||Kate Williams|Secretary|Resigned March 2021|| ||Joseph Annandale|Treasurer|2017-|| ||Sarah Rees|Trustee|Resigned Aug2022|| ||Rachel Gemine|Trustee|Resigned Aug2022|| ||Sylvia Evans|Trustee|2017- ongoing|| ||Graham Evans|Trustee|2017- ongoing|| ||Gethin James|Trustee|03/09/22- ongoing|| ||GaryStone|Trustee|03/09/22- ongoing|| ||Marie James|Trustee|03/09/22- ongoing|| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| **Names of the trustees for the charity, if any, (for example, any custodian trustees)** **Name Dates acted if not for whole year** **TAR** March **2012** 1 ## **Names and addresses of advisers (Optional information)** |**Names and addresses of advisers (Optional information)**|**Names and addresses of advisers (Optional information)**|**Names and addresses of advisers (Optional information)**| |---|---|---| |**Type of adviser **
**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, friend 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: - policies and procedures adopted for the induction and training of trustees; - the charity’s organisational structure and any wider network with which the charity works; - relationship with any related parties; - trustees’ consideration of major risks and the system and procedures to manage them. ## **Section C Objectives and activities** -Promote the awareness and understanding of rare lung diseases in West Wales **Summary of the objects of the charity set out in its governing document** -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. **TAR** March **2012** 2 -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. WORLD was founded in 2018. Specific activities this last financial year have been affected by COVID / other winter viruses. Most of our members have been shielding, classed as very vulnerable due to their lung conditions and are reluctant to attend public gatherings:  Our AGM planned for October 2022 was cancelled due to only 4 registrants.  Charity events included fundraising: `o` Just Giving charity London marathon 2024 `o` Curry & Quiz night including raffle 8/12/2023 with 120 attendees raising more than £1000  AGM with speakers confirmed in Parc Y Scarlets 14/03/2023 **Summary of the main activities undertaken for the** Trustee Meetings (including refresh of Trustee’s from active Members) **public benefit in relation to** and strategy development: **these objects (include within** -29/11/2022 **this section the statutory** -05/08/2022 **declaration that trustees have** -19/01/2022 **had regard to the guidance issued by the Charity**  Raising awareness and promoting the charity by increasing activity **Commission on public** on social media: **benefit)** `o` Webpage https://www.joinusatworld.com `o` Facebook and Twitter to help promote the charity and its work  More video stories from patients documenting their illness, diagnosis and impact have been filmed and edited and now uploaded to the website  A TripAdvisor for disabled (respiratory travellers is under design) Trustee Sylvia Evans attended annual Rare Disease Patient network meeting on-line November 10[th] 2022 An informative session on various developments in care and diagnosis of people with rare diseases. We have now affiliated with Genomics UK. ## **Additional details of objectives and activities (Optional information)** **TAR** March **2012** 3 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: - policy on grantmaking; - policy programme related investment; - 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 erformance p **TAR** March **2012** 4 Section D Achievements and erformance p ## **Summary of the main achievements of the charity during the year** 1.August 2022 committee of members submitted for approval to Trustees a leaflet they had been working on for benefit of people using oxygen more user friendly and to point than what was available: Practical Hints and Tips on Short/Long Trips with Oxygen 2. We officially became member of Genetic Alliance September 2022 after meeting with their engagement and support officer and our application agreed by their board They can: Advertise any events we have Share any work we do like our patient stories W.O.R.L.D. contact details and information is on their web page so we can reach wider audience We can keep up to date and influence care by attending their members meetings 3. We have a current balance of £9000 to enable website maintenance, AGMs (hire of rooms and equipment) and support our story telling / collection of patient experiences. Our website and social media pages have had had over 3,000 views. **TAR** March **2012** 5 **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 £9,000 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 in deficit** Not applicable ## **Further financial review details (Optional information)** You **may choose** to include additional information, where relevant about: - the charity’s principal sources of funds (including any fundraising); - how expenditure has supported the key objectives of the charity; We held a ‘Curry & Quiz night’ to raise funds but have been fortunate in our donations from Trustees, supporters and raffles at our meetings as our continued main source of income. Our expenditure relates to supporting our meetings, maintaining our website and purchasing advertising materials. Our income and expenditure activities were due to presented at our Annual General Meeting in October 2022 but will now be presented 0n 14/03/2023. We have not invested any funds and have no intention to make any investments in the future - investment policy and objectives including any ethical investment policy adopted. ## **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)** Keir Lewis **Position (eg Secretary, Chair,** Chair **etc) Date** 03/03/2023 **TAR** March **2012** 6 WORLD – Wales Orphan and Rare Lung Disease Registered charity 1177810 Financial report for WORLD from 2[nd] April 2021 to 1[st] April 2022 |**INCOME**||**BALANCE**||**EXPENDITURE**| |---|---|---|---|---| |||**8318.54**||| |8.4.21 Virgin Money
Giving|20.00|8338.54||| |||||| |||8188.54|150|13.4.21 R Davies Video Editing| |||7978.54|210|13.5.21 CIAOWEB Annual
payment & videos| |||||| |13..5.21 D Joseph (sold
merchandise)|35.00|8013.54||| |26.5.21 Cheque to pay in
M Joseph (sold
merchandise)|60.00|8073.54||| |||||| |6.6.21 KEL repayment|33.40|8106.94||| |||7987.94|119|8.7.21 Payment Kaye Bradley
Communications support| |||||| |||7933.22|54.72|20.8.21 MSFT Office 365| |21.08.21Angela & family
re memorySheila Thomas|20.00|7953.22||| |||||| |21.08.21 Delyth Williams
re memorySheila Thomas|40.00|7993.22||| |21.08.21 KEL books/pens|20.00|8013.22||| |21.8.21 Friends & family
in memoryJulie Harries|534.62|8547.84||| |28.821 Liz Brady in
memoryof Bill|100|8647.84||| |||||| |28.8.21 Mavis in memory
of Sheila Thomas|20|8667.84||| |||8487.84|180|1.10.21 J Nelmes Facelift Design
WORLD flyer design| |||||| |13.10.21 Virgin Money|17.50|8504.84||| |||8410.77|94.57|18.10.21 Just Print WORLD
flyers & cards| |||||| |||8385.77|25|19.10.21 Just Print WORLD
membershipforms| |||8130.77|255|19.10.21 Kaye Brayley
communications support| |||||| |28.10.21 Virgin Money|180|8310.77||| WORLD – Wales Orphan and Rare Lung Disease Registered charity 1177810 |||8242.77|68|28.11.21 Kaye Brayley
communication support| |---|---|---|---|---| |||||| |8.12.21 Donation in
memoryof Sheila Thomas|120|8362.77||| |21.12.21 Donation Mr &
Mrs Jones|30|8392.77||| |||||| |4.1.22 Donation in
memory Barrie G Jones
(£255) & Carol Edwards
(£405)|660|9052.77||| |4.2.22 Carol Edwards|135|9187.77||| |||||| |||**9187.77**|||