Covid, National Family Camp, Women's Weekend, Q & A Session, Youth Leadership Training, Upcoming events, and all the Latest News from HFNZ... |
|
|---|
|
The latest from the Haemophilia Foundation of New Zealand - September 2021 |
|
|---|
|
|
Following the Cabinet meeting on 20 September the Prime Minister announced that Tāmaki Makaurau would go down to level 3 as of 11:59pm on Tuesday 21 September.
This was well-deserved by all in Tāmaki Makaurau for going the distance for the rest of us in Aotearoa. Ka pai!
Meanwhile, all of Aotearoa south and north of Tāmaki Makaurau remained at alert level 2. A further assessment for all of New Zealand will occur this Monday 04 October. With daily case number declining, we're all hoping for a return to lower alert levels.
Thank you all, particularly those in Tāmaki Makaurau, for doing the mahi and making sure friends and whānau are protected. You can find out more about what the different alert levels mean here: https://covid19.govt.nz/alert-levels-and-updates/
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.
The best thing you can do to ensure that your friends and whānau are safe from Covid is to get vaccinated. To book your vaccine go to https://bookmyvaccine.covid19.health.nz/
For information about support services offered by HFNZ please visit our website: https://www.haemophilia.org.nz/
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.
|
|
|---|
|
HFNZ National Family Camp |
|
|---|
|
We've started getting organised for National Family Camp 2022. We have a date: 19 - 22 April, 2022. We now also have a venue: The Christian Youth Camp in Ngāruawāhia. All we need now is you!
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.
To help in our planning we're looking for expressions of interest in attending NFC in 2022. If you think that you and your whānau would like to attend, click the button below and choose an option.
This is not a commitment, it's just to help us with logistics. Registrations will open later in the year. |
|
|---|
|
We're getting excited about Women's Weekend!
This fantastic HFNZ event is all set to go on November 12 - 14 in Dunedin, the theme is Living in Changing Times. This is a great opportunity for women with a diagnosed bleeding disorder, or who carry the haemophilia gene, to get together, share stories, and learn new things.
Registration has now closed for this event, and we're underway putting the final touches on the programme. It's looking like a really great weekend!
Keep your eye's peeled for photos and reports in our December Bloodline |
|
|---|
|
Q & A Session for Parents of Children with Mild Bleeding Disorders
|
|
|---|
|
Coming up next week we have a Q & A session for parents of children with mild BD.
If your child’s bleeding disorder isn’t severe enough to require regular prophylactic treatment, but they do like sports, rough and tumble with siblings, and jumping on a playground, how worried should you be?
And what should you tell their school or kindergarten?
Join Vanessa Minor, Haemophilia Nurse from the Auckland HTC, in an online session to get your questions answered and connect with other parents.
When: 2pm, Thursday 07 October
Where: ZOOM.
Just click the button below to log in at the appointed time and date.
You're welcome to email early questions to Darian at darian@haemophilia.org.nz, and we'll put them to Vanessa on your behalf.
|
|
|---|
|
Youth leadership training
|
|
|---|
|
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 of these events is envisaged before Xmas this year!
We are currently doing planning around dates etc., and will begin planning in earnest very soon. Watch this space...
|
|
|---|
|
20th Australian Conference on Haemophilia, VWD, and Rare Bleeding Disorders |
|
|---|
|
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.
|
|
|---|
|
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.
|
|
|---|
|
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
|
|
|---|
|
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. |
|
|---|
|
Here's what HFNZ have lined up for members in the coming months:
HFNZ AGM
30 October, 2021. Wellington or Zoom, to be advised.
Women's Weekend
12 - 14 November, 2021. Dunedin.
Youth Leadership Training
Date and venue to be confirmed.
National Family Camp
19 - 22 April, 2022. Christian Youth Camp, Ngāruawāhia.
If you have any questions about any of these events, please don't hesitate to drop us a line at info@haemophilia.org.nz. |
|
|---|
|
| |
|
