2024-03-31-accounts - Haemochromatosis International

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AGM 29[TH] OCTOBER 2024 7pm UTC

Haemochromatosis International AGM 29th October 2024

AGM NOTES

QUESTIONS WELCOME AT END OF EACH PRESENTATION
RECORDING?
MOTIONS - VOTING PROCEDURE
i) Members and Member Organisation Reps. Only
ii) Proposer
iii) Seconder
ZOOM POLLS
For Trustee Appointments and Confirmations
Presidential Election

Haemochromatosis International AGM 29th October 2024

AGM AGENDA 2024

WELCOME, INTRODUCTIONS & AGENDA HOWARD DON
• MOVE TO ACCEPT MINUTES OF PREVIOUS AGM PAT EVANS • TREASURER’S REPORT ROB EVANS • REPORT FROM EFAPH/HI JOINT SCIENTIFIC COMMITTEE GRACA PORTO • HI BOARD REPORT • VOTES OF THANKS HOWARD DON • MEMBER ORGANISATIONS UPDATE MEMBERS • BOARD TRUSTEE APPOINTMENTS HOWARD DON • PRESIDENT ELECTION • AOB? ALL • THANKS AND CLOSE HOWARD DON

Haemochromatosis International AGM 29th October 2024

2023-2024 Treasurer’s Report Rob Evans

Accounting period: 1st April, 2023 to 31st March, 2024. The financial position will be reported up to 31st March, 2024
As HI does not have an income over £25,000, its accounts are not required to be independently examined, but need to be formally accepted by the board at the AGM

	Summary 2022-2023 £ GB 2023-2024 £ GB Opening balance 1979.67 7857.51 Income 6484.52 806.81 Expenditure (606.68) (809.74) Closing balance 7857.51 7854.58

Income 2022-2023 2023-2024 £ £ Subscriptions 782.09 622.34 Grants 0 0 Donations 5702.43 184.47 Total 6484.52 806.81

	Expenditure 2022-2023 £ 2023-2024 £ Charitable activity 606.68 709.02 Governance 0 100.72 Administration 0 0 Professional fees 0 0 Total 606.68 809.74

Current financial position	Current financial position	2024-2025 £

Opening		7854.58
Subscriptions Charitable donations		540.49 1354.29
	Expenditure owing (estimated)	612.65
Total expenditure		612.65
Estimated available funds		9136.71

FINANCIAL SUPPORT

• Novartis (2015) US $15,000 (£12,688.75) • DRG Germany and DRG USA (2017) Euro 3,000 (£2,496.88) • Resonance Health Analysis Services Australia (2019) (£532.62) Most of these funds were used to help towards attendance costs of various Committee members at AGM meetings.

Member Organisations for this accounting period

Germany, Portugal, USA (paid subs 2022), Norway, Canada, Italy, Hungary, Australia, Ireland, Spain, EFAPH, France (France Fer and AFH), Brazil, New Zealand and Denmark.

Our subscription fee is kept purposefully low (50 GB pounds) so that all organisations may join, and we also offer waived subscriptions for groups that need it. There have been difficulties using the euro currency, hence the change to GB pounds
We remain reliant on corporate grants such as these from Novartis, DRG and Resonance Health to fund our larger cost activities but these have not been forthcoming recently. However, we have been very fortunate to receive large charitable donations this year which is probably attributable to increased awareness
Expenses related to attending meetings to further our charitable aims were formerly paid and accounted for most of the expenditure. In the absence of further grant funding, our main expense is now the HI website
As an internet-based organisation, administration costs are very low/zero, and no salaries are paid to any of our trustees, nor do they receive any other form of reimbursement for their work

HI is a Charitable Incorporated Organisation (CIO), registered in the UK

As a CIO, the object of HI is to promote and protect the health of people with haemochromatosis in any part of the world, in particular by:
Increasing awareness of haemochromatosis
Promoting advances in diagnosis, treatment, and prevention of Haemochromatosis
Contributing to basic and clinical research in the field of iron metabolism, through a network of collaborating national haemochromatosis associations throughout the world.

HI BOARD - PRESIDENT’S REPORT HOWARD DON

Haemochromatosis International AGM 29th October 2024

STRATEGIC PLAN 2023-2026 ACCEPTED BY HI BOARD ON 03-08-2023

MISSION STATEMENT
ORGANISATIONAL OBJECTIVES (Constitutional)
PRIORITIES (Website)
STRATEGIC OBJECTIVES 2023-26

Haemochromatosis International AGM 29th October 2024

MISSION STATEMENT

OUR MISSION IS TO PROMOTE AND PROTECT THE HEALTH OF PEOPLE WITH HAEMOCHROMATOSIS IN ANY PART OF THE WORLD VIA A MUTUALLY SUPPORTIVE NETWORK OF NATIONAL ASSOCIATIONS, ENHANCED BY CLINICAL, SCIENTIFIC AND PATIENT EXPERTISE.

Haemochromatosis International AGM 29th October 2024

CONSTITUTION

OBJECTIVES

INCREASE AWARENESS AND MEDICAL KNOWLEDGE OF HAEMOCHROMATOSIS, WORLDWIDE.
PROMOTE ADVANCES IN DIAGNOSIS, TREATMENT, AND PREVENTION OF HAEMOCHROMATOSIS.
PROMOTE INTERNATIONAL CONSISTENTENCY IN THE DIAGNOSIS AND TREATMENT OF HAEMOCHROMATOSIS.

Haemochromatosis International AGM 29th October 2024

WEBSITE

PRIORITIES

1. THE GEOGRAPHICAL EXPANSION OF THE ALLIANCE

2. TO MAINTAIN AND DISSEMINATE INTERNATIONALLY RECOGNISED GUIDELINES

3. FACILITATE SIGNPOSTING TO UP TO DATE RESEARCH AND THINKING ON HAEMOCHROMATOSIS

4. FACILITATE COLLABORATION BETWEEN MEMBER ORGANISATIONS AND THE SHARING OF BEST PRACTICE

5. TO CONTINUE TO DEVELOP AND EXPAND THE IMPACT OF WORLD HAEMOCHROMATOSIS WEEK

Haemochromatosis International AGM 29th October 2024

STRATEGIC OBJECTIVES SEPTEMBER 2023 TO AUGUST 2026

1. TO EXPAND MEMBERSHIP TO STRENGTHEN OUR IMPACT.

EFAPH - report good activity in Europe
USA. - HI to support where needed.
New Zealand – good support from NZ Blood for WHW
South Africa – No activity other than patient contact
South America – Brazil re-established links with Paulo
Argentina. – Gone quiet, Facebook group disappeared
Mexico - KT found FB Group – HD has contacted and been accepted.

Haemochromatosis International AGM 29th October 2024

2. TO INCREASE THE IMPACT OF WORLD HAEMOCHROMATOSIS WEEK

Target increasing the number of venues lit up by 5% year on year.
TOTAL 476 VENUES WORLDWIDE - UP FROM 242 – 97% INCREASE
SPAIN 1ST
AUSTRALIA 2ND
GREAT EFFORTS FROM IRELAND, CANADA,
USA, HUNGARY, FRANCE, PORTUGAL & UK
Recruit more volunteers to distribute posters. Success hard to measure
QR code linking to the HI website, increase “hits” No evidence need tools
Multi language Posters on “resources” webpage English Spanish, Hungarian, Polish – more next year?

Haemochromatosis International AGM 29th October 2024

STRATEGIC OBJECTIVES 2023-26 CONT.

3. ADVOCATE FOR ABILITY TO ACCESS VENESECTIONS AS THERAPEUTIC DONORS FOR PATIENTS IN EVERY COUNTRY .

Develop relationships with:-
The International Federation of Blood Donor Organizations (IFBDO) HD contacted. Mtg Emerencia to discuss Friday 01-11-24
The International Society of Blood Transfusion
Alliance of Blood Operators

4. MAINTAIN OUR THERAPEUTIC RECOMMENDATIONS IN HFE HAEMOCHROMATOSIS

Joint Scientific Committee will ensure our recommendations remain current - ONGOING

5. TO INCREASE INCOME BY EXPLORING ALTERNATIVE REVENUE STREAMS.

Funds raised this year additional to member subs.:-
World Week sponsored walk “Family FB group raised - £780 approx.
Bank matched funding for above - £500 Thanks to Alma Morse!
More of this?
Long term aim - international donors. Specific Projects?
Establish a demonstrable track record. - FAQ E- booklet in production now -ideal

Haemochromatosis International AGM 29th October 2024

STRATEGIC OBJECTIVES 2023-26 CONT

6. TO MAINTAIN A DIVERSE AND KNOWLEDGEABLE BOARD OF TRUSTEES TO SECURE OUR FUTURE.

i) Be truly representative of our membership - geographical diversity. Board well on target to achieve this
ii) Range of experience in – Governance, Patient advocacy in national organisations and clinical or research experience. Proposed board has wide experience and skillset.

7. COMMUNICATION AND COLLABORATION:

i) Facilitate communication, collaboration and sharing of resources. Ongoing

ii) Website

Keep current.
Expand members resources section. Posters, FAQ e-booklet coming
• Regularly update news section. CDB
Target increasing the number of hits year on year by 5%. How to measure?
Donations via Paypal. Had hoped to boost during WHW – needs more thought
Needs a revamp – suggest professional help would be a good use of funds
Patient Queries coming in – how to handle – signposting not always enough

Iii) Social Media

The Facebook group will continue to be a closed group - HI members only.
Great informal support from The Family Facebook Group - Alma
LinkedIn and Twitter - target increasing follower numbers by 5% year on year.
In truth, probably could be more active – room for improvement.

END – QUESTIONS?

Haemochromatosis International AGM 29th October 2024