We celebrate the launch this week of the first National Strategic Action Plan for Rare Diseases and look forward to collaborating with others in the sector to ensure the voices of people living with rarer diseases, like muscular dystrophies, are heard.
The launch of the Action Plan coincides with Rare Disease Day on 29th February this Saturday, which has garnered unprecedented worldwide attention.
These are really exciting times because, as you know, rare disease conditions such as muscular dystrophies are often overlooked and aren’t as highly prioritised on the agenda for grants and research, compared to more common medical conditions.
The more awareness we can raise about muscular dystrophies the more positive impact we will have on the day-today lives of people who live with muscular dystrophy, and the closer we’ll ultimately get to find a cure.
We are really looking forward to collaborating with Rare Voices Australia and other government bodies to help amplify your voice in the research, health sectors and community in general.
What a great and promising start to 2020!
You can read Rare voices Australia Action Plan here