2021-04-01-accounts

To

Trustees' Annual Report for the period

Period start date Day01 Month4 Year2020

Period end date Day1 Month4 Year 2021

From

Section A Reference and administration details

Charity name Other names charity is known by Registered charity number (if any) 1177810

Wales Orphan and Rare Lung Disease

WORLD

Newton House Llandyfan Llanelli Postcode SA18 2UD

Charity's principal address

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
	Kate Williams	Secretary	Resigned 01/12/2020
	Joseph Annandale	Treasurer
	Sarah Rees	Trustee
	Rachel Gemine	Trustee
	Sylvia Evans	Trustee
	Graham Evans	Trustee

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)

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.

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-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 charity was profoundly affected by the COVID pandemic. Our activities were cut short because the respiratory clinicians (KEL and JA) were working full-time and our social activities were completely stopped after our last face-to-face AGM, urgently placed in Feb 2020 to discuss the oncoming pandemic. We evolved to an on-line presence, holding Trustee meetings through Teams (June 2020, March 2021) and a small AGM in:

• Our Chair gave an invited talk on COVID to the group and to people with other rare conditions at the All Wales Genomics Conference (online) summer 2020

Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)

• Informal coffee-morning (on-line) for social support x2

• Fundraising activities became opportunistic as larger fundraising events (marathons) were cancelled. A business donation of £3000 and an on-line sponsored spin-cycle raised £2500 (see financial summary)

• We have now designed and had fundraising items made e.g. pin badges, pens and wrist bands were supplied to members (non-profit) and we supplied washable 3-layer face-masks to all members. Some items, especially masks were sold to the public to improve brand awareness and generate small income (see financial return)

• We continued raising awareness and promoting the charity by increasing activity on social media: o Webpage https://www.joinusatworld.com

• More video stories from patients documenting their illness, diagnosis and impact have been filmed and edited to be uploaded to the website.

• We have now created a o Facebook page o Twitter @WalesRare

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:

• 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

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Section D Achievements and erformance p

See above Summary of the main achievements of the charity during the year

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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 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);

Our expenditure relates to supporting our meetings, maintaining our website and purchasing advertising materials. Our income and expenditure activities for the related financial year are attached.

We have not invested any funds and have no intention to make any investments in the future

• how expenditure has supported the key objectives of the charity;

• 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)

Keir Edward Lewis Full name(s) Joseph Alexander Annandale Position (eg Secretary, Chair, Treasurer Chair etc) Date 22/03/22

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