Upload a Photo to “Handprints Across America” in Support of Mitochondrial Disease – Foundation for Mitochondrial Disease Marks 6th Annual Rare Disease Day
February 28, 2013 marks the 6th annual Rare Disease Day – an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. According to the Orphan Drug Act of 1983, any disease affecting fewer than 200,000 people is considered rare. There are nearly 7,000 rare diseases affecting nearly 30 million Americans, resulting in almost one in ten Americans suffering from rare diseases.
The national sponsor of the day in the U.S. is the National Organization for Rare Disorders (NORD), and the global sponsor is the European Organisation for Rare Diseases (EURODIS). Other than dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, fine information and get treatment. The rarity of their conditions makes medical research more difficult.
The Foundation for Mitochondrial Medicine supports NORD’s efforts in the US because although mitochondrial disease is becoming less rare (1 in 2,500), it is related to many more familiar diseases including Autism, Parkinson’s, Alzheimer’s, Lou Gehrig’s disease, muscular dystrophy and chronic fatigue syndrome. Diagnosing mitochondrial disease can be a long and frustrating journey for a patient or a family because it often looks like several other disorders.
The Foundation encourages anyone with mitochondrial disease to go to the website: www.RareDiseaseDay.Us/take-action-now/handprints-across-America to upload a photo of themselves in support of awareness of mitochondrial disease. You can also visit www.facebook.com/RareDiseaseDay.US to show support of mitochondrial disease. The Foundation would also like anyone with mitochondrial disease to share their stories with the Foundation by going to its website at www.mitochondrialdiseases.brentjohns.com and selecting the “take action” button and then the “share stories” button.
“Rare Disease Day gives patients and families of those with mitochondrial disease another opportunity to build awareness of the disease by sharing their stories and by participating in the Handprints Across America project,” said Laura Stanley, executive director of the Foundation for Mitochondrial Medicine. “The more awareness we gain, the more we can help influence global collaboration towards a cure for mitochondrial disease.”
The Foundation for Mitochondrial Medicine’s mission is to support the development of the most promising research and treatments of the many forms of mitochondrial disease. Mitochondrial disease is an energy production problem that occurs when the cell’s mitochondria, or “power plants,” don’t function properly and create an energy crisis. The disease primarily affects brain, heart and muscle cells in varying degrees. Treatments and cures for mitochondrial disease can impact cures for related diseases like Autism, Alzheimer’s, Parkinson’s, and muscular dystrophy among others. For more information on the Foundation and information about funding of specific research projects, please visit www.mitochondrialdiseases.brentjohns.com.