The GFPD is excited to once again be a Rare Disease Day partner. Rare Disease Day began in 2008 with the mission to raise awareness throughout the world about rare diseases and their impact on patients’ lives. Rare diseases are often not well understood and research is almost always underfunded. By focusing on all rare diseases, Rare Disease Day has become an important part of building awareness among policy makers and health professions to fund deeper research into diseases. 1 out of 10 people will live with a rare disease at some point in their life, and there are still many diseases that are unknown. Rare Disease Day encourages researchers and health professionals to address the needs of those living with a rare disease and to increase public knowledge and awareness of rare diseases
The GFPD has partnered with Rare Disease Day this year to continue our mission to spread awareness of peroxisomal biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD). Knowledge of rare diseases gives people the opportunity to understand and help. Before my internship with the GFPD, I had no personal connection to PBD-ZSD. I researched the disorder before my interview, trying to understand everything as best as I could. However, it is not the disorder that compelled me to interview. For years, I have volunteered for children with disabilities in classrooms and with the Special Olympics. The biggest lesson I learned is that it is not the disorder or disease that matters, it is the person. So, I immediately connected with those working at the GFPD to raise awareness of the disorder, not because I had personal experience or knew a child who had a PBD-ZSD, but because every child matters—and that’s why we are all working so diligently at the GFPD.
On February 28th, 2018, Rare Disease Day, I encourage you to find a way to help support those with rare diseases. We invite you to tell the story of how a rare disease has affected your life, or the life of a loved one. Spreading awareness to just one other person will mean Rare Disease Day is successful.
Please visit our Facebook event to find out more ways you can help: facebook.com/events/581180735556701/
Or visit us on social media on Facebook and Twitter @GlobalFoundPD and on Insta @theGFPD.