Youth camp, HFNZ webinar, vWD survey, WFH World Congress, Upcoming events, and all the Latest News from HFNZ... |
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The latest from the Haemophilia Foundation of New Zealand - July 2021 |
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HFNZ Youth Camp 2021 has been and gone, and a great time was had by all. We had a fantastic group of attendees, and a wonderful bunch of leaders to support them.
Over the course of a long school holiday weekend we managed to squeeze in a number of fun activities, as well as some really important BD education.
We watched the Bombardier Blood movie, about Chris Bombardier's quest to be the first person with Haemophilia to conquer the highest peaks on each of the seven continents. We went rock-climbing. We visited the museum, where we learned more about exploration in extreme environments.
All in all it was a very successful weekend. You can read all about it in the upcoming issue of Bloodline. In the meantime, here are some images of what went on... |
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On Wednesday 25 August at 7:30pm HFNZ will introduce the first of our new educational webinars. Presented by physiotherapist Abhi Tikkisetty from the Waikato DHB, this webinar will look at the importance of looking after your joints, and give you some tips and tricks to maintaining good joint health.
We intend to produce regular educational webinars on a variety of topics over the coming months, so keep your eye out for more details. If you have any ideas or suggestions for content you'd like to see, let us know at info@haemophilia.org.nz.
Registration information for the first webinar will be emailed to all members soon. |
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HFNZ are looking at how we support members with von Willebrands and other rare non-haemophilia A or B bleeding disorders. The first step is to find out what you think. To that end we emailed a survey link to all those members that fit the criteria.
If you have vWD, or another rare non-haemiophilia A or B bleeding disorder, and you missed the survey link, drop us a line at info@haemophilia.org.nz and we'll send it out for you.
The survey closes on Sunday 08 August. |
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With the slow decline in the use of carried mail, HFNZ have changed the way we receive letters and other hard-copy correspondence. Instead of Outreach Workers each having their own PO Box, from now on we'll have just two PO Boxes: one in Wellington, and one in Christchurch.
The main delivery address for HFNZ remains the Christchurch PO Box, which is checked regularly. If you want to send mail to Darian, Laura-Lee, Rosie, or the admin team please address it to:
PO Box 7647
Sydenham
Christchurch 8240
The Wellington PO Box is checked less regularly. If you want to send mail to Sue, Deon, or Lynne please address it to:
PO Box 24014
Manners St
Wellington 6142
Anything we receive in either of these boxes will be scanned and forwarded to the people who need it. |
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20th Australian Conference on Haemophilia, VWD, and Rare Bleeding Disorders |
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The 20th Australian Conference on Haemophilia, VWD and Rare Bleeding Disorders will take place from 8-9 October 2021 virtually.
If you have ever wanted to attend a conference and couldn’t because of time constraints, travel or costs, this is the perfect time to do so!
The program will be stimulating and informative and there will be presentations from people living with bleeding disorders as well as expert health professionals and other speakers from Australia and around the world.
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The World Federation of Hemophilia, in conjunction with the Canadian Hemophilia Society are pleased to announce that plans for the WFH 2022 World Congress are taking shape. 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 Policy and Access Summit
When: September 8 & 9, 2021. More info coming soon.
Global Forum on Research and Treatment Product for Bleeding Disorders
When: November 2021. More info coming soon.
2022 World Congress
More information coming soon!
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Update your member details |
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In order to increase the reach of HFNZ communications, and improve member outcomes, we continue to update member details in the database. The most pressing details are email addresses and dates of birth.
Having a current email address for you and your whānau is important as we try to manage costs. 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.
The other essential detail is date of birth. We need this so that we can be sure you're on the list for age-restricted events, like Adult Weekend, Youth Camp, and Women's Weekend. If we have no DOB for you the database won't filter you in to age-based mailing lists. Again, if you're not sure that we have your DOB, please let us know. |
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Hello Team.
Thanks to our Haemo Hikers for joining us last Sunday at the Old Stone House.
It was great to catch up and enjoy some of the stunning views in the surrounding area. Despite a lack of Ross on our early morning incursion; we made sure to get our heart rate up while we took the scenery in. Thanks for making the effort to join us, its about the people after all.
Keep an eye out for our next hike, everyone is welcome
Kyle.
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Here's what HFNZ have lined up for members in the coming months:
Women's Weekend
19 - 21 November, 2021. Venue to be advised.
National Family Camp
April 2022. Date and venue to be advised.
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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