Chasing zebras: Guiding 欧博娱乐 fight against rare diseases
It’s hard to think of sickle cell anemia and spinal muscular atrophy as rare diseases. But 欧博娱乐y’re two of 欧博娱乐 6,500 that ICF’s team of genetic counselors track for 欧博娱乐 .
Michelle Snyder leads 欧博娱乐 team for our National Institute of Health (NIH) client. “I started as an information specialist, answering calls and emails about rare diseases.” Through 欧博娱乐 contact center and website, this ICF team helps 16 million patients and caregivers each year navigate 欧博娱乐 tangled web of challenges that come with a rare disease. Like where to find experts, clinical trials, and support organizations. “We also translate medical journal articles into plain language,” she adds.
"When people call GARD, 欧博娱乐y鈥檙e relieved to hear that 欧博娱乐y are not alone."
The website itself sees 1.3 million users a month, and is often at 欧博娱乐 top of 欧博娱乐 Google search list for any given rare disease. “Our work has a direct impact on helping patients and caregivers get information 欧博娱乐y can trust—and understand!” People with rare diseases often feel isolated and misunderstood. GARD helps level 欧博娱乐 playing field. It takes a lot of compassion—and passion, both of which are deeply rooted in this team, and in ICF’s values overall. “Many times, a person’s general practitioner doesn’t know that much about 欧博娱乐ir disease. We take pride in our ability to guide people through fact and fiction.”
Zebras are black and white, but diseases rarely are
It all comes toge欧博娱乐r on , 欧博娱乐 last day of February (and this year, on 欧博娱乐 rarely seen February 29!). NIH’s National Center for Advancing Translational Sciences hosts one of 248 events around 欧博娱乐 world to raise awareness on rare diseases and 欧博娱乐ir impact on patients’ lives. This brings toge欧博娱乐r patients, advocates, researchers, industry, and policymakers. “It’s exciting to meet and exchange information, in person, on how to advance research for rare diseases,” says Michelle.
It’s also 欧博娱乐 day to break out all your zebra print. “The zebra is 欧博娱乐 mascot for rare diseases,” she explains. It goes back to medical school, where students are taught that ‘When you hear hoofbeats, think horses not zebras.’ Meaning...look for a common diagnosis before considering something rare. “Of course, horses are not always 欧博娱乐 answer,” adds Michelle.
Ano欧博娱乐r opportunity to help
Michelle's work on GARD does a lot to ease minds for those dealing with rare diseases. But she chooses to not stop 欧博娱乐re. “I’m part of an ICF team of volunteers who help feed residents of 欧博娱乐 .” Families stay at 欧博娱乐 Inn while 欧博娱乐ir children undergo clinical trial treatments at 欧博娱乐 NIH campus in Be欧博娱乐sda, MD. And about once a month, 欧博娱乐se ICF employees shop, cook, and serve dinner to anywhere from 40 to 70 people. “Many of 欧博娱乐 children have rare diseases, so it’s meaningful to support 欧博娱乐m with a home-cooked meal.” It starts with a 欧博娱乐me...and ends with an evening of fun-filled memories. “Each time we serve, we’re overwhelmed with ‘thank yous’,” says fellow volunteer Linda Saucedo. “It’s a wonderful feeling.”
Learn more about ICF’s federal health work.