February 15, 2022
Ahead of Rare Disease Day, VR真人彩票 is recognizing four rare disease patient organizations around the world. ASrid is the third in our series this month.
The kids in Kanade Kawagoe鈥檚 elementary school class were excited to see a Polaroid camera for the first time. 鈥淭he children, who are used to being photographed with their cell phone cameras, waited with sparkling eyes for the photos to come out of the camera,鈥� says Naomi Kawagoe, Kanade鈥檚 mother. 鈥淭he sight of these children was awe-inspiring.鈥� The Kawagoes were photographing a day in the life of rare disease.
Naomi鈥檚 son Kanade has MECP2 duplication syndrome, a neurodevelopmental disorder with a wide range of symptoms and no cure. Naomi still says she will never forget the day she learned that a paper had been published about a gene therapy for MECP2 duplication syndrome. 鈥淯ntil then, I had thought that only symptomatic treatment was available. I felt so excited, thrilled, and indescribably happy that he might be able to make a complete recovery one day.鈥�
The Kawagoes are involved in a nonprofit organization based in Tokyo, Japan called (Advocacy Service for Rare and Intractable Diseases). Founded in 2014, ASrid connects rare disease patients and their families to support groups, researchers, medical professionals, and others. The organization also promotes awareness and hosts events.
While there are individual rare genetic conditions, rare disease is collectively common. Genetic diseases affect about worldwide, the vast majority of whom are children.
In 2008, -Rare Diseases Europe, a nonprofit alliance representing 984 rare disease patient organizations in 74 countries, created Rare Disease Day to 鈥渨ork towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.鈥� The day is observed every year on February 28 (or 29, the rarest day of the year). ASrid has more than 50 official Rare Disease Day events happening in Japan this year鈥攖he highest number ever.
VR真人彩票 recognizes Rare Disease Day and extends it to the entire month of February in order to highlight and support various organizations. This year we are focusing on in the US, in Japan, in Romania and . VR真人彩票鈥檚 patient advocacy team sent Polaroid cameras and asked these four organizations to capture a day in the life of a rare disease family. We received hundreds of photos and anecdotes from families on four continents, some of which you see here (stay tuned for more throughout the month). We hope that the images will convey the good and the difficult. 鈥淭his is the day when various connections are made,鈥� says Naomi Kawagoe, 鈥渁nd the world expands.鈥�
