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6 | InTouch SPRING 2026 Australasian Neuromuscular Network (ANN) I was thrilled to attend the Australasian Neuromuscular Network (ANN) meeting in Perth, held back in June this year, as a representative for MDANZ. As with most of these meetings and conferences, the best part is about making connections with others. ANN brings together a network of clinical and allied health professionals, researchers, patient organisations, and representatives of pharmaceutical companies. They are all united in their goal to improve the care of individuals affected by Neuromuscular Conditions across Australia and New Zealand. There were 274 delegates from 20 different countries, with a large New Zealand contingent also in attendance. It is estimated that there are 300 million people worldwide with a rare disorder, most of which are genetic in origin. Treatments for some conditions are getting closer, and there are nowmany clinical trials available, including here in New Zealand. Prior to the conference starting, I met up with Kim fromMyositis Australia and Kelly, a researcher from the Myositis Discovery programme, one of the largest Australian research programmes. It was great to hear about services and support offered to patients and their families, and we were able to establish some future speakers (see below) for our very active IBM online support group. NEWS ROUNDUP Partner Steve was also invited along to their regular lunch meeting, which I was unable to attend because it clashed with day one of the main conference. Themes from the conference were that exercise is beneficial for everyone regardless of their condition. Stretching and range of motion exercises are also important for maintaining flexibility and function. Several speakers also discussed depression and anxiety, as these can be a feature of some conditions. For young people transitioning from paediatric to adult services, planning is critical and should ideally start around age 12. Young people should be encouraged to have more autonomy over their health and care and be mentored to grow their resilience and self-confidence. One speaker touched on the importance of ‘first conversations’ with individuals and families, as these can be very impactful as people grapple with receiving bad news. The relationship with a specialist may continue for many years, so things must start on a positive note. DPO Coalition We continue to represent the needs of the Neuromuscular community by meeting with Ministers and government officials to give feedback on proposed and current work programmes. These meetings are either in person inWellington or online. Updates are published as a key message on www.dpoc.org.nz. Online support groups We hosted a presentation by Denise Bentall, who spoke on her experience with a drug trial for Myotonic Dystrophy. She is participating in this via Punaha Io the Neuro-genetic Registry, which anyone with a Neuromuscular Condition can sign up to. Further information is on our website under research. The IBM group met with the team from Perth who are researching and supporting people with IBM. They kindly shared resources on exercise, research updates and day-to-day management, including tips on managing swallowing difficulties. Their Physio emphasised the importance of exercise and strength training to assist with maintaining function. Online groups for CMT and FSHD continue to meet. If you have a condition that isn’t mentioned here and you’d like to meet others, please let us know, and we can set one up. Rare Disorders Next month I will be attending the Rare Disorders support group lead hui in Wellington. You may have seen their campaign on the Forbidden Pharmacy around access to medicines. One of our members with SMA has already been featured in the media as part of this, as Spinraza for those aged over 18 years remains unfunded and on Pharmac’s ‘options for investment’ list. An update from our Member Services manager