Today is our special day as the world recognises people with a rare disease such as Myasthenia. The MAA share the 2025 logo with you and perhaps you will share this email with others. For the rare disease sector there are challenges to gaining comprehensive and equitable care and to being understood. Celebrating today and telling others why you are celebrating is a step towards a better life for us all. Do embrace this day on behalf of everyone who travels life with a rare disease.
Rare Voices Australia again hosted a Parliamentary Luncheon to maintain a focus on rare conditions. It was held in Canberra on February 11th and the Myasthenia community were represented once again. We have become a familiar face to politicians, the RVA team, to other small support groups and to industry. Susan White supported by Donna Formosa proudly attended the 2025 event. It was a heartwarming day with multi-party engagement evident in all the speeches. The principals embraced by the National Strategic Action Plan for Rare Diseases (announced February 2020) are solidly cemented, and policy is reflecting the priorities captured in the action plan.
Please enjoy a selection of photos below from this significant day.
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