DOCUMENT

6 | InTouch AUTUMN 2024 Support Rare Disorders NZ by sharing their social media tiles: http://tinyurl.com/2xn497j5 Rare Disorders 2024 Ways to get involved • Contact your local schools or kura to mark Rare Disease Day with a Glow Up and Show Up dress-up or accessory day! Here is a template letter to help you contact your school. Some other ideas for ways schools can get involved can be found here. Rare Disorders want New Zealanders all over the motu to glow up and show up for rare during the month of March to show the rare community that they are valued and deserve better support. NEWS ROUNDUP CMT Youth Camp 2024 MT Aussie Kids is back and excited to announce details of the next CMT Youth Camp in 2024. We are the organisers of CMT Australia’s camp for children with Charcot Marie Tooth, otherwise known as the CMT Aussie Kids. Our camp will be held in Mt Victoria in the Blue Mountains of NSW Friday, 2 August – Sunday, 4 August 2024. We believe the camp offers youth so much in terms of self-confidence, self-awareness and triumph. Just because all the participants happen to have CMT doesn’t change that. In fact, what safer way to enjoy these activities than with peers who are all living with CMT? We’re talking about youth with CMT helping each other, having the understanding that they’re not facing this alone, that others have strategies to learn from and we all have something to share and to teach. We also have social media so you can stay connected with other youth living with CMT in Australia and New Zealand. CMT Aussie have fundraised enough to be able to offer a travel assistance subsidy to the value of $350 for New Zealand attendees. For more info on the camp, please contact Jillian and Peter Critchley. Mobile 0428 221 264 or cmtaussiekids@gmail.com • Rally local community groups, your workplace, family and friends to organise a fundraising event to show their support for rare and get creative with ways to Glow Up and Show Up; • Ask local businesses to create something unique for Rare Disorders Month to help raise funds – orange sticky buns anyone? A unique bright ‘glow up’ cocktail perhaps? Pink cappucinos? • Participate in sporting events and encourage others to sponsor you with the funds raised going to Rare Disorders NZ; • Donate through our givealittle page – https://givealittle. co.nz/org/rare-disorders-nz ; • Spread awareness and show support on social media using the below hashtags: #GlowUpShowUp #DoRightByRare #RareDisordersMonth Events • Rare Disorders NZ stand at Newtown Festival, Wellington 3 March • Rare Beer Challenge 2024 at Fortune Favours, Wellington, 8 March • Rolleston Community get- together , Cantebury, 31 March • A Rare Kind of Walk , Auckland, 30 March • Medical Student Essay writing competition during March