“You May Never Be More Moved at the Movies”
Disorder: The Rare Disease Film Festival is to be held in Boston in October. The festival is a new event with films from around the world that will feature the challenges of daily life while living with a rare disease. Many, though not all, of the films are documentaries. The filmmakers in attendance will have a question and answer session with the audience following the presentation of their films. In addition, rare disease researchers and patient advocates will also share their experiences.
Rare diseases pose a significant medical and economic burden for patients, their caregivers, their communities, and their healthcare systems. Although there are an estimated 7,000 known rare diseases, that number does not reflect the countless number of family members, caregivers, and friends who watch a loved one struggle with health challenges. The challenges arise from lack of effective, or known, medication, lack of knowledge, lack of funding, lack of research. Disorder: The Rare Disease Film Festival hopes to change that by providing awareness of the challenges that the sufferers of rare diseases face.
The total number of Americans living with a rare disease is estimated to be between 25 and 30 million. This estimate shows that while an individual disease may be rare, the total number of people dealing with a rare disease is actually quite considerable. They are your friends, neighbors, family members, and co-workers and you might not know the daily obstacles they must manage.
Disorder: the Rare Disease Film Festival hopes to personalize the struggles of sufferers rare diseases by showing real people who face real adversity. It is the brainchild of two dads who have children who face their own challenges and obstacles because of a rare disease. Bo Bigelow is the founder of MaineRare, and took to social media to help find a diagnosis for his daughter’s rare genetic disorder. Daniel Defabio has written about and has produced a documentary on Menkes Syndrome. Together, they aspire to bring awareness to rare disease by showcasing those who are faced with difficulties.
Disorder: the Rare Disease Film Festival hopes to increase awareness and provide a face for rare diseases. As we move together into the future, it is this awareness that will help spur new research and finding new medicines and new treatments. For more information on the festival, visit their website at: