Covid, HFNZ AGM, HFNZ Constitution, Covid-19 Vaccination, Upcoming events, and all the Latest News from HFNZ... |
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The latest from the Haemophilia Foundation of New Zealand - October 2021 |
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On Monday 01 November, the Prime Minister announced that Waikato will move to Alert Level 3, Step 2 on Tuesday 2 November at 11:59pm, meaning outdoor gatherings can increase to 25 and public facilities, such as libraries and zoos, and retail can open with mask-wearing, contact tracing and physical distancing.
She also announced that Auckland may move to these same settings next Tuesday 9 November at 11:59pm.
To ensure the safety of members, HFNZ encourages you all to be fully vaccinated, if possible, when attending HFNZ events, such as the Family Camp in April and Women’s Weekend in June, 2022. To book your vaccine go to https://bookmyvaccine.covid19.health.nz/
HFNZ is closely monitoring the latest developments and will make sure all members are well informed. We are maintaining ongoing contact with key groups, including clinicians and pharmaceutical companies, and taking advice from the World Federation of Hemophilia and the NZ Ministry of Health.
There is no concern over the availabilty of treatment in New Zealand; companies are required to have 3-6 months stock in the country at any time. However, it remains important that you don't wait until you are out of treatment before organising more. It is good practice to keep two weeks worth of treatment, at your normal level, on hand at all times.
It's important that we all stay connected at this time. HFNZ encourages you all to keep talking to one another, send aroha from afar, and above all, be kind to one another.
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On Saturday 30 October HFNZ held it's first virtual AGM. Thanks to the magic of technology we were able to get together, from across the country, to fulfill our constitutional obligations.
Speaking of which, the main piece of business at this year's AGM was the ratification of changes to the HFNZ Constitution. You can read more about that below.
At the AGM the current executive team were confirmed for another year. Deon York will remain as President, Catriona Gordon and Karl Archibald are Vice-Presidents, and Hemi Waretini is our Treasurer.
Hemi reported on a good financial year for the Foundation. There were expectations of a 30% drop in funding from Kiwifirst, due to the impacts of Covid. However, the actual drop was only 12%, which was a very good result, in the circumstances. Elsewhere, we had a number of bequests and large donations, which helped mitigate the effects of reduced income.
The Annual Report for 2020/21 will be available on the HFNZ website soon. |
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Revised HFNZ Constitution |
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As mentioned above, at the recent HFNZ AGM the main order of business was a special resolution to amend the HFNZ Constitution.
This was a piece of work that began in 2019, with a view to ensuring that the constitution is modernised and continues to reflect the charitable purpose of HFNZ, and the way that the Foundation and its members operate in today’s world.
At the AGM Lauren Phillips took us through the proposed changes, explaining why they were made, and how they will support HFNZ to continue to be an effective organisation into the future.
The draft constitution was ratified by members at the meeting, and has now replaced the previous version. You can read the revised constitution, with changes marked, here. |
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At HFNZ we support the Covid-19 vaccine rollout. We want to make sure that all of our HFNZ whānau are safe and protected from the most serious effects ot the virus.
Whether or not to get vaccinated is a personal choice. At HFNZ we want to be sure that all members have the best possible opportunity to avoid the worst effects of Covid-19.
The best way to make a good decision is with good information. There is a lot of unreliable misinformation out there. To learn more about the vaccine, we recommend the following:
The sooner we are all vaccinated, the sooner we can get back to normal. |
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HFNZ National Family Camp |
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Planning continues for National Family Camp on 19 - 22 April, 2022 at the Christian Youth Camp in Ngāruawāhia.
National Family Camp is for families where a child aged 0 - 10 has a diagnosed bleeding disorder, or is the sibling of of a child with a bleeding disorder.
Young families, where a child is newly diagnosed with a bleeding disorder, often need support and information to manage the impact of the disorder on their family. The National Family Camp enables parents to access education in a supportive environment, while their children are enjoying their own recreational programmes.
Opportunities are included for families to mix together so that they can establish friendships and develop support networks with other families who understand and live with bleeding disorders.
Registration will open soon, so keep an eye on your inbox!
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Sadly, due to the ongoing Covid situation, Women's Weekend has been postponed until 10-12 June 2022.
Thought was given to going ahead without women from Level 3 areas, but we quickly decided that it would not be the same without all of you being involved.
We are very disappointed that we were unable to go ahead with the planned November dates. However, with the continued uncertainty around Covid, we prefer to take a cautious approach.
Watch this space for revised information closer to the time. |
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Youth leadership training
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HFNZ values the input of the National Youth Committee, and is committed to fostering the development of our young leaders, who will go on to become the leaders of the Foundation.
Following discussions with some of the youth leaders at Youth Camp, and at the National Council meeting which followed, we've made a commitment to ongoing youth leadership training events.
The first event is being planned for Wellington in late January or early February 2022.
We are currently doing planning around dates etc., and will begin planning in earnest very soon. Watch this space...
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Susan Skinner Memorial Fund Scholarship programme
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The deadline for the Susan Skinner Memorial Fund Scholarship program is quickly approaching: November 15, 2021.
The Susan Skinner Memorial Fund Scholarship program aims to cultivate leadership and promote engagement of women in the global bleeding disorders community by providing opportunities for education, training, and networking. Our goal is to empower scholars to advocate for improved care of women with bleeding disorders in their own communities and around the world.
The global call for applications is for women aged 18 to 60 years old. Applicants must have a bleeding disorder or be a carrier as well as committed to supporting the work of their local NMO or branch.
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The World Federation of Hemophilia, in conjunction with the Canadian Hemophilia Society are pleased to announce that registration is now open for the WFH 2022 World Congress. This important event will take place from 8 to 11 May, 2022. Here's what the organisers have to say about the event:
The World Federation of Hemophilia (WFH) and the Canadian Hemophilia Society (CHS) are excited to welcome the global bleeding disorders community to the WFH 2022 World Congress — the first major hybrid event of the international bleeding disorders community. The in-person component of the hybrid Congress will take place in Montreal, Canada, with select sessions being broadcast through our virtual platform to an expected audience of more than 8,500 virtual attendees.
The Congress program will cover the latest developments in our field, current patient healthcare issues, and the challenges ahead for the management and treatment of hemophilia, von Willebrand disease, rare factor deficiencies and inherited platelet disorders. In addition to this rich scientific content, there will also be ample opportunities for participants to make new friends and reconnect with old ones.
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The World Federation of Hemophilia has a number of useful educational webinars coming up. These are often at difficult times for us in NZ, but they're well worth it if you can be up at the right time. They are also often recorded, and made available to those who have registered.
Here's what's coming up:
WFH Practical Education on Bleeding Disorders: Knowledge for All webinar series
When: Tuesday, July 28, 2021, 12-2AM NZST; Tuesday, October 13, 2021, 12-2AM NZST; Thursday, December 17, 2021, 12-2AM NZST.
Global Forum on Research and Treatment Product for Bleeding Disorders
When: November 4-5 2021.
More info here
PACT Comprehensive Care webinar series
When: November 11th
More info here
Virtual Scientific Session on Prophylaxis
When: Tuesday, November 16th, Tuesday, November 23rd
More information to come
WFH Practical Education on Bleeding Disorders: Knowledge for All webinar series
When: Thursday, December 16, 2021, 2-4AM NZDT
More information to come
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Keep your member details up to date |
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In order to get the most out of your membership, it's important to keep your details up to date. The key details are email address and date of birth.
Posting invitations and information to members is an expensive business, and where possible we would prefer to make contact electronically. If you have an email address, but you're not sure that we have it, please let us know.
If we have no DOB for you we can't filter you in to age-based mailing lists, like Adult Weekend, Youth Camp, and Women's Weekend. Again, if you're not sure that we have your DOB, please let us know. |
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Here's what HFNZ have lined up for members in the coming months:
Youth Leadership Training
Date and venue to be confirmed.
Southern Xmas Party
28 November, 2021. 11:00am–2:00pm
Register here
National Family Camp
19 - 22 April, 2022. Christian Youth Camp, Ngāruawāhia.
Women's Weekend
Postponed until 10-12 June, 2022. Dunedin.
If you have any questions about any of these events, please don't hesitate to drop us a line at info@haemophilia.org.nz. |
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