February 28th is international Rare Disease Day, an opportunity to raise awareness and educate people about the thousands of rare conditions that affect more than 377,000 New Zealanders.

WHAT CAN YOU DO?

Share for Rare.

Host a morning or afternoon tea, or set a date / choose a venue and invite friends, family and colleagues to come along, show support and make a donation. Use rare ingredients, wear unusual outfits…! Contact NZORD if you would like copies of the poster above: comms@nzord.org.nz

Share stories via social media. You might want to share personal stories or the stories of Sarah, Evie, Preston and Jethro which can be found on the NZ rare disease day website.

Change your profile pic or cover photo – download profile pics, banners etc from this page on the international website.

You may also want to share the following stories about living with PWS:

• Share Noel’s PWS diagnosis story, written for Rare Disease Day 2016.
• Share Pia’s story about her teenage daughter, Olivia, who has PWS, written for EURORDIS, the European rare disease alliance, in 2015.
• Share Rebecca’s story about her son, Kieran, who has PWS, written for The Mighty about Rare Disease Day 2016.
• Share Jennifer’s story about her son, Nolan, who has PWS, written for the Global Genes in 2012.

Watch Maria Picone’s video about how she was inspired to set up TREND to further knowledge about PWS in our community.

Share this video where Maria talks about how her daughter’s diagnosis of Prader-Willi syndrome inspired her to start TREND Community, which helps other families also affected by rare disease. It is an important message about how vital the sharing of information is within and amongst rare disease groups.

Join TREND and help turn your anecdotes into evidence. 

Watch this video to find out more. Go to the TREND website here.

Join the Global PWS Registry

The purpose of the PWS Registry is to enhance the understanding of the full spectrum of PWS characteristics.  The registry will also accelerate the completion of studies and clinical trials, plus determine areas of needed research and treatments.

Register to provide details on topics such as as developmental milestones, scoliosis, medications, appetite, behaviour and other clinical symptoms.