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NZ Organisation for Rare Disorders Column

NZORD - the New Zealand Organisation for Rare Disorders

1 – Many families organising events around the country.
We are thrilled at the energy and imagination of so many families around the country, and delighted at the willingness of corporate groups to get into the action to support the cause.

• Mufti days and coin trials are happening at schools in Devonport, Nelson, and Whangarei.
• A North Shore family has already held two successful fundraising barbeques outside their local Mitre 10.
• Many public libraries are having rare disease day displays.
• An Auckland family have sold out a theatre for a fundraising movie night.
• A Taupo garden and floral art group is organising a raffle.
• The dancing shoes will get a work out in Palmerston North with a ‘high school prom’ and auction at the local pub.
• Girl guides and scouts in Glenfield will be holding a disco and auction.
• Tasty treats will be bountiful in the Queens St and Lambton Quay offices of a law firm with a bake off competition.
• Newspaper features are being prepared in many local papers across the country.
• Medical centre and workplaces in Whangarei are into mufti day fundraisers.

Whangarei certainly seems to be leading in the activity stakes when population is factored into the equation. Well done up there.

2 – Jean Fleming talks rare diseases on “Nights with Bryan Crump” Radio NZ National.
Science communications Professor Jean Fleming is talking to Bryan Crump on his “nights” programme on Thursday 28th. She will discuss rare diseases, NZ connections with research into them, and the benefits to common disease knowledge from studying the rare and obscure.

3 – Rare Disease Day seminar in Wellington.
NZORD will be hosting a seminar on 28th February. The main focus of the event will be to examine the particular problems that still exist in New Zealand with access to specialised medicines for rare “orphan” diseases. There will be presentations from support groups, people with rare disorders, supporters, academics, and the legal profession. Policy makers and press have been invited. All interested in the topic are welcome. No registration costs. Just RSVP. More details at this link.

4 – Raise awareness and raise funds for your chosen condition.
Remember, you can choose the group that you want to benefit from your efforts. See the NZ Rare Disease Day website for details on organising events, downloading posters, and getting funds to your chosen group – either directly to them or, if they don’t have a bank account, we can hold the donations in trust for them. Alternatively, if you don’t have a particular rare disease group to support, donations can be made directly to our rare disease research efforts at www.fundraiseonline.co.nz/NZIRDR

5 – Super-fit athletes get into gear for Rare Diseases.
Some of our super fit supporters choose to support rare disease research while performing feats of endurance! Prof Mike Eccles, has already taken part in the Lake Taupo Cycle Challenge, and Stacey Smith is currently preparing for the Tarawera 100k ultra-marathon next month. 100k? Unbelievable! You can support their efforts for us by visiting their fundraising pages: www.fundraiseonline.co.nz/StaceySmith/ or www.fundraiseonline.co.nz/MichaelEccles/

6 – It’s a global effort. We are not alone.
Rare Disease Day is an international event. Approximately 60 countries and hundreds of patient groups are participating this year! The international theme for this year is ‘rare disorders without borders’ emphasising the global approach towards rare diseases and that together we are strong. So whatever you get up to for rare disease day, remember that many others around the world will also be raising their hands for rare diseases. Check out the totally cool video-clip from Eurordis.

7 – The NZ Rare disease Day theme – support the Rare Gems in our community.
We have introduced a specific New Zealand theme this year, with a special logo to match the Rare Gems theme. This is our recognition of the value we place on those affected by rare disorders. We will be developing this theme more in the coming years.

Best wishes for a successful day.

www.nzord.org.nz

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