2022-03-31-accounts

Dianne Prince

HI Board Report

Haemochromatosis International is the global alliance of haemochromatosis associations, established to advance the health of people with haemochromatosis in any part of the world. Current member organisations are:

Haemochromatosis International AGM

1

December 2022

HI Board Report

Dianne Prince

Membership of the international alliance enables an organisation

• to benefit from a global view and access to international medical experts and researchers, resources and guidelines

• to be part of a supportive network, connecting & collaborating with other societies; exchanging ideas, and sharing information, best practices, therapeutic and clinical strategies and communication strategies; and to learn how other members resolve the same and different problems

• to enhance its public profile, to advocate more strongly for access to treatment and health practice changes, and to influence health policy through preparing international guidelines together

• to amplify awareness of HH worldwide through participating in joint international awareness raising initiatives during WHW, using common logo for WHW interacting with other stakeholders on social media

Haemochromatosis International AGM December 2022

2

Strategic Objectives

• To improve awareness of haemochromatosis throughout the world by facilitating the sharing of best practices among member organisations

• To support geographical expansion of the alliance and the development of new organisations

• To encourage the adoption of best clinical practices by developing and disseminating internationally recognised guidelines for the diagnosis and treatment of hereditary haemochromatosis, and by supporting clinical trials and research

HI Board Report

Dianne Prince

Factors influencing success

Clarity - mission, vision, values, goals, strategy, processes, communication, structure, roles

Contribution - value to and of stakeholders

Credibility – committee & advisors, quality outcomes, results

Connectedness - to stakeholders, members, donors, sponsors, governments, researchers, partners

Capital - financial, intellectual, human, social

Capacity - people, infrastructure, resources

Creativity - resourcefulness, innovation

Haemochromatosis International AGM December 2022

3

HI Board Report

Dianne Prince

Strategic Objective 1:

To improve awareness of haemochromatosis throughout the world by facilitating the sharing of best practices among member organisations.

• Support member organisations in their campaigns by sharing information via social medial channels (Twitter, Facebook, Instagram)

• Maintain resources page on HI website with information & materials which can be re-used by other MOs

• Post calendar of events – quarterly board meetings plus MO webinars via zoom or MS teams

• Share experts’ presentations on HI website

• Provide HI logos for MOs to use on their websites & social media channels

• Establish social media/communications subcommittee from MOs.

Haemochromatosis International AGM December, 2022

HI Board Report

Dianne Prince

Strategic Objective 2:

To support geographical expansion of the alliance and the development of new organisations

• Establish contacts with clinicians in identified countries where no patient support organisation exists

• Establish contacts with local informal groups on social media

• Share resources on how to set up organisation, administration & governance

• Facilitate introductions between member organisations

• Contact individuals who register on Disease Map in countries where no support organisation currently exists?

• Iceland

• USA

• New Zealand

• South Africa

• Central and South America

Haemochromatosis International AGM December, 2022

5

HI Board Report

Dianne Prince

Strategic Objective 3:

To encourage the adoption of best clinical practices by developing and disseminating internationally recognised guidelines for the diagnosis and treatment of hereditary haemochromatosis , and by supporting clinical trials and research

Haemochromatosis International AGM December, 2022

6

HI Board Report

Dianne Prince

 Factors influencing success: Clarity

Our very clear shared Vision: to prevent harm from iron overload

Canada

An end to suffering and premature death related to hemochromatosis in Canada.

Ireland

Our vision is to ensure that no one in Ireland goes undiagnosed or untreated

Australia

No Australian will suffer harm from haemochromatosis

Haemochromatosis International AGM

7

December 2022

HI Board Report

Dianne Prince

 Factors influencing success: Creativity Elsie’s Road Trip, Virtual Balloon Race, Light Up Red & FotoFeXPO

Haemochromatosis International AGM December, 2022

8

HI Board Report

Dianne Prince

Factors influencing success: Connectedness 

Identifying and Connecting with stakeholders who can help

Haemochromatosis International AGM

9

December, 2022

HI Board Report

Dianne Prince

Factors influencing success: Contribution 

Recognising and promoting our value to stakeholders

Haemochromatosis International AGM

10

December, 2022

2021-2022

Treasurer’s Report Rob Evans

• Accounting period: 1st April, 2021 to 31st March, 2022. The financial position will be reported up to 31st March, 2022

• 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 2020-2021 £ GB 2021-2022 £ GB Opening 1011.98 1317.65 balance Income 407.64 896.15 Expenditure (101.97) (234.13) Closing balance 1317.65 1979.67

Income 2020-2021 £ 2021-2022 £ Subscriptions 407.64 355.86 Grants (Resonance 0 0 Health) Donations 0 540.29 Total 407.64 896.15

Expenditure 2020-2021 £ 2021-2022 £

Charitable activit 101.97 y

234.13

Governance 0 Administration 0 Professional fees 0 Total 101.97

0 0 0 234.13

	Current financial position 2022-2023 £ Opening 1979.67 Subscriptions Charitable donations 782.09 5252.72 Expenditure owing (estimated) 370 Total expenditure 370 Estimated available funds 7644.48

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), UK (left Aug 2021), 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

• related to to further our charitable aims were

• Expenses attending meetings 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, 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, 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:

1. Increasing awareness of haemochromatosis

2. Promoting advances in diagnosis, treatment, and prevention of Haemochromatosis

3. Contributing to basic and clinical research in the field of iron metabolism, through a network of collaborating national haemochromatosis associations throughout the world.

Looking forward, we need to continue to increase our income through numbers of subscriptions, recruiting more members and from corporate support. If we are to be able to continue funding to attend international we must seek more meetings, urgently funding. Any ideas?

These accounts were accepted by the Board of Trustees at the AGM of 8[th] December 2022

10/1/2023