BRPH employees joined rare disease patients, caregivers and other health care advocates looking to make a difference as part of Rare Disease Day® 2017.
The firm’s Community Outreach committee organized a fundraiser and awareness luncheon where employees donated money in exchange for a light lunch. The walls of the lunch room were filled with stories of employee family members and friends who are battling rare diseases, as well as educational information regarding those and other rare disease affecting individuals across the world.
“The purpose of the lunch was to provide employees with information regarding rare diseases that they likely wouldn’t receive in their normal day-to-day lives,” said BRPH Communications Manager and event organizer, Erin Stroupe. “The intent was to join in on Rare Disease Day and raise awareness of the diseases affecting our colleagues’ loved ones. Providing lunch for purchase offered a small fundraiser to benefit an organization supporting Rare Disease Day- the Rare Disease United Foundation.”
According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 Americans. One in 10 Americans live with a rare disease—affecting 30 million people—and nearly half of these patients are children. There are more than 7,000 rare diseases, 95 percent of which have no treatment. Often, research gets funded by the families and friends of patients or by patient organizations.
More than $280.00 was raised during the awareness luncheon, with discounted pizza provided by local small business, New York Pizza & Pasta Café.
Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face. Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations.RSS