Reflections on Rare Disease Day 2017
Today, February 28, 2017 is International Rare Disease Day (RDD). While it is just one day on the calendar, people affected by rare diseases are impacted by their condition 24 hours, 7 days a week, 365 days a year.
A rare disease is defined as a medical condition that impacts a small percentage of the population, less than 1 in 2000 people.
• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases affect children.
Muscular Dystrophy Canada supports research to find treatments for over 150 different types of rare neuromuscular disorders. You see, muscular dystrophy isn’t just one disorder; Different genetic mutations cause different disorders. While investments in research over the past decade have resulted in a tremendous increase in our knowledge, and understanding of the molecular causes of neuromuscular disorders, we still have a long way to go.
We are not looking for just one cure. It is likely that there will need to be multiple therapeutic interventions.
And until that time comes, we at Muscular Dystrophy Canada are here with you. We will fight alongside you. We will provide you with support and information to help you get the services and care that you need. We will connect you with others in the community. And we will be tireless in our determination to find treatments and cures – so that one day, you and your loved ones will not be affected by these debilitating rare diseases.
If you are affected by a rare disease, you may be the only person in your local community or the only person you know with that condition. But, today is a time to be reminded: you are not alone!
Marla Spiegel, Research Director
Are you affected by a neuromuscular disorder? Register for free to stay connected to Muscular Dystrophy Canada, here.