Rare disease day 2022, COVID, Short story competition, HFNZ National Family Camp, National Youth Hui, WFH World Congress, Upcoming events, and all the Latest News from HFNZ...
The latest from the Haemophilia Foundation of New Zealand - February 2022
Covid
As of 11:59pm on Thursday 24 February, the way COVID-19 is managed in the community changed. With more people testing positive and hospitalisations rising, we have now moved into phase 3. Because so many of us are vaccinated New Zealand is better-positioned than most countries to respond to Omicron. That means a more devolved response, and much greater self-management.
 
There are 3 major changes to how phase 3 will be managed:
 
Isolation
 
Close contacts will no longer be required to self-isolate and only confirmed cases and household contacts of a confirmed case will be required to do so. Confirmed cases and household contacts should isolate for 10 days but can now self-release after day 10, providing any testing requirements are met. If they develop symptoms, they are encouraged to test sooner.
 
The critical worker exemption scheme announced this month will enable eligible household contacts to return to work during their isolation periods by returning a daily negative Rapid Antigen Test.
 
Testing
 
With millions of RATs now distributed around the country to testing sites, GPs, pharmacies and within workplaces, RATs will become the primary form of testing. You can now access a RAT from hundreds of locations around the country, making getting a test much easier and over the coming days the number of access points will increase significantly.
 
Locations which have RATs available can be found on the HealthPoint website: https://www.healthpoint.co.nz/. PCR testing will be reserved for people where it’s clinically indicated they need it. 
 
Contact tracing
 
We’re now moving to a stance of greater self-management. This includes use of a new self-investigation tool which will support positive cases to self-notify contacts.
 
Because only household contacts are required to isolate, the tool will help track high risk exposure events or locations. Contact tracing teams will now focus on identifying and tracing those who have visited these high-risk location such as hospital or aged care facility.
 
There will be continued support for those members of our community who are not digitally set up.
 
You can find more information about how to self-manage COVID-19 here:
https://covid19.govt.nz/isolation-and-care/care-in-the-community/
 
It has also been noted that there are over one million Kiwis who are eligible for their booster vaccination, who have not yet got their shot. The government says that, while two shots is good protection for Delta, three shots is recommended to mitigate the effects of the current Omicron outbreak. To find out more about boosters, and where you can get yours, go to: https://covid19.govt.nz/covid-19-vaccines/how-to-get-a-covid-19-vaccination/getting-your-booster-dose/
 
For now, the government are asking all New Zealanders to get boosted, wear a mask in indoor settings and outside when you can’t distance from others, and reduce contact as much as is practical. Also, in the coming days take steps at home and with your family, neighbours and community to make a plan to be ready. Resources to help you do this are on the Unite Against Covid-19 website: https://covid19.govt.nz/prepare-and-stay-safe/be-prepared-for-covid-19/
 
People who test positive for COVID-19 should call Healthline on 0800 358 5453 for advice.
HFNZ short story competition
Over the summer HFNZ ran a short story competition for young members. The task was to write a story, less than 1000 words, that includes the subject of summer.
 
We had some fantastic entries, and are now very pleased to announce the place getters:
 
1st - Noah Gordon aged 12 from Northern
2nd - Raukokore Stirling aged 8 from Northern
3rd - Jimmy McCabe aged 10 from Central
 
Congratulations to all winners, and thanks to all who participated. You can read the winning entries on the HFNZ site, here: https://www.haemophilia.org.nz/news-and-research/news/2022-hfnz-short-story-competition
HFNZ National Family Camp
Due to the ongoing development of the current COVID-19 Omicron outbreak, the decision has been made to postpone the National Family Camp scheduled for 19 - 22 April, 2022.
 
This is a very important event for HFNZ families where a child aged 0 - 10 has a newly-diagnosed bleeding disorder. These families often need support and information to manage the impact of the disorder. The National Family Camp enables parents to access education in a supportive environment, while their children are enjoying their own recreational programmes.
 
We are committed to proceeding with the National Family Camp when we can be sure that the risk is lower. 
 
Planning is well-advanced for the camp, and will remain in place pending a new date. In the meantime, keep an eye on your inbox for further updates.
 
If you have any questions contact us at info@haemophilia.org.nz
Youth leadership training
Due to the increasing high case numbers of the current COVID-19 Omicron outbreak, the HFNZ Office has also decided to postpone the upcoming face-to-face National Youth Hui in Wellington. HFNZ is mindful of the diverse health needs of its members, and are reluctant to put them at risk in this current pandemic environment. We understand that this may be disappointing for those of you who have already registered.
 
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. On that basis we are planning to run a Virtual Youth Hui on Saturday 26 March as a stop gap measure until we can have a face-to-face meeting later in the year. This event will be open to all members aged 18-35, and will focus on reconnection, as well as some planning for future activities. We encourage you all to get involved.
 
Details of the Virtual Youth Hui will be out soon, so keep an eye on your inbox. 
 
If you have any questions contact us at info@haemophilia.org.nz
Women and Bleeding Disorders
In 2017 HFNZ undertook a survey to find out how women with bleeding disorders were affected during menstruation. The data showed that 87% of women reported excessive bleeding during their period, 82% used more than one sanitary product at a time, and 46% faced financial hardship due to the cost of purchasing sanitary products.
 
This year HFNZ are undertaking an advocacy programme to support women and girls who are burdened by the high cost of sanitary products. We are approaching companies that produce period products to find ways for members to access reduced-cost products, and underwear.
 
If you have concerns about your bleeding, your Outreach Worker is a great place to start. If you're interested in self-assessment, check out letstalkperiod.ca, which has a number of resources and a specific self-assessment tool.
WFH 
2022 World Congress
 
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 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.
 
While we cannot send anyone in person this year, HFNZ will support any member who would like to attend World Congress on the virtual platform. As HFNZ President Deon Yorks says, " it’s a great opportunity for people to learn what’s happening without leaving the house". 
 
Click here to register: https://congress.wfh.org/registration/register-now/ or contact info@haemophilia.org.nz to find out more.
 
New WFH website
 
The World Federation of Hemophilia have a new website, and a new logo. The new site is optimized to make interacting with all WFH resources, events, and updates easier by:
  • Focusing on ease of access to foster more engagement and collaboration with our community
  • Helping our NMOs, HCPs and all members of our community more intuitively find the tools and resources they need to succeed
  • Offering a more modern and current news platform with even more information for readers
Check out the new and improved site here: https://wfh.org/
Keep your member details up to date
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.
Upcoming events
Here's what HFNZ have lined up for members in the coming months:
 
Youth Leadership Training
Face-to-face hui postponed. Virtual Hui on Saturday 26 March

National Family Camp

Postponed. New dates tbc.
 
Women's Weekend
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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