## HI BOARD - PRESIDENT’S REPORT HOWARD DON Haemochromatosis International AGM 1 December 2022 ## 2022-2023 ACTIVITIES ## • **WORLD HAEMOCHROMATOSIS WEEK** - **“LIGHT UP RED” – TOTAL 242 VENUES WORLDWIDE** - **MOST GOT SOME, AND MANY IMPROVED** - **AUSTRALIA - TOP** - **SPAIN – WOW!** **PATIENT NEEDS SURVEY PUBLISHED – MAYKA SANCHEZ & TEAM** **WORK ON STRATEGIC PLAN** Haemochromatosis International AGM 20th 2 September 2023 STRATEGIC PLAN 2023-2026 ACCEPTED BY HI BOARD ON 03-08-2023 - **MISSION STATEMENT** - **ORGANISATIONAL OBJECTIVES (Constitutional)** - **PRIORITIES (Website)** - **STRATEGIC OBJECTIVES 2023-26** - **THANKS TO PAUL JOHNSTON** Haemochromatosis International AGM 20th September 2023 3 ## **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 20th September 2023 4 ## **OBJECTIVES** ## **CONSTITUTION** 1. INCREASE AWARENESS AND MEDICAL KNOWLEDGE OF ## HAEMOCHROMATOSIS, WORLDWIDE. 2. PROMOTE ADVANCES IN DIAGNOSIS, TREATMENT, AND - PREVENTION OF HAEMOCHROMATOSIS. 3. PROMOTE INTERNATIONAL CONSISTENTENCY IN THE - DIAGNOSIS AND TREATMENT OF HAEMOCHROMATOSIS. Haemochromatosis International AGM 20th September 2023 5 ## **PRIORITIES** ## WEBSITE ## **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 20th September 2023 6 ## **STRATEGIC OBJECTIVES SEPTEMBER 2023 TO AUGUST 2026** ## **1. TO EXPAND MEMBERSHIP TO STRENGTHEN OUR IMPACT.** - Sweden and Iceland progressing in Europe, (EFAPH) - USA. - HI to support where needed. - Support New Zealand and, possibly, South Africa to re-establish N.Os. - South America – Brazil re-establish links. - Argentina and Uruguay. ## **2. TO INCREASE THE IMPACT OF WORLD HAEMOCHROMATOSIS WEEK** - Target increasing the number of venues lit up by 5% year on year. - Recruit more volunteers to distribute posters. - QR code linking to the HI website, increase “hits” - Multi language Posters on “resources” webpage Haemochromatosis International AGM 20th September 2023 7 ## **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)** - The International Society of Blood Transfusion - Alliance of Blood Operators ## **4. MAINTAIN OUR THERAPEUTIC RECOMMENDATIONS IN HFE HAEMOCHROMATOSIS** - Our Joint Scientific Committee will ensure our recommendations remain current ## **5. TO INCREASE INCOME BY EXPLORING ALTERNATIVE REVENUE STREAMS.** - Cannot rival our member M. Os. - Bequests and donations welcome. - Long term aim - international donors. Specific Projects? - Currently have funds - establish a demonstrable track record. - GP suggestion of new patient handbook under discussion. Haemochromatosis International AGM 20th September 2023 8 ## **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. ii) Range of experience in – Governance, Patient advocacy in national organisations and clinical or research experience. ## **7. COMMUNICATION AND COLLABORATION:** i) Facilitate communication, collaboration and sharing of resources. ## **ii) Website** - Keep current. - Expand members resources section. - Regularly update news section. - Target increasing the number of hits year on year by 5%. - Donations via Paypal. ## **Iii) Social Media** - The Facebook group will continue to be a closed group - HI members - only. - LinkedIn and Twitter - target increasing follower numbers by 5% year - on year. Haemochromatosis International AGM 20th 9 September 2023 ## **2022-2023** ## **Treasurer’s Report Rob Evans** - Accounting period: 1st April, 2022 to 31st March, 2023. The financial position will be reported up to 31st March, 2023 - 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 2021-2022 £ GB** Opening 1979.67 1317.65 balance Income 6484.52 896.15 Expenditure (606.68) (234.13) Closing balance 7857.51 1979.67 **Income 2022-2023 £ 2021-2022 £** Subscriptions 782.09 355.86 Grants 0 0 Donations 5702.43 540.29 Total 6484.52 896.15 **Expenditure** **2022-2023 £ 2021-2022 £** Charitable activit 606.68 234.13 y Governance 0 Administration 0 Professional fees 0 Total 606.68 0 0 0 234.13 ||**Current financial position**
**2023-2024 £**
Opening
7874.79
Subscriptions
Charitable donations
486.43
71.55
Expenditure owing (estimated)
477
Total expenditure
477
Estimated available funds
7955.77| |---|---| ## **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: 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 meetings, we must urgently seek more funding. **Any ideas?**