On the rarest of calendar days, advocate for those who live with rare diseases
On the last day in February each year, advocates around the globe work to bring attention to 7,000 recognized rare diseases. These rare diseases, in many cases, have a significant impact on those who have been diagnosed, or are working hard to find a diagnosis. Yet, they go relatively unnoticed by the general public. Because of the limited knowledge of many of the disorders in the list, those who live with rare diseases learn early on that they must be their own advocates, both in medical settings and in the world. As Julie Flygare, a woman living with narcolepsy, told Mashable:
“You won’t necessarily know someone is living with a rare disease unless they tell you. And with 1 in 10 Americans living with a rare disease, chances are you likely know a few people facing the challenges of living with a rare disease.
“For me, having a rare disease means that most people have either never heard of my disorder or have misconceptions of how it affects my life. It’s OK to not know, and it’s OK to ask to learn more.”
It’s important that we join those who live with rare diseases in their advocacy. Today, we challenge everyone to learn a little bit about at least one rare disease and to push others to do the same.
Children Who Wait with Rare Diseases
Children who have been diagnosed with a rare disease and wait for adoption also need advocates. Because the needs of these children are lesser known, or possibly unknown, they face an additional barrier to matching with a permanent, loving family. Right now we are advocating for children who wait with rare diseases or disorders such as: Epidermolysis Bullosa, Glycogen Storage Disease, Klippel-Trenaunay Syndrome, Sacrococcygeal Teratoma and Hydrocephaly.
Please take a moment to learn about these diseases and the children who are living with them. You can meet the children who wait by visiting our Waiting Child Photolisting, or if you research one of the medical diagnoses above, and would like to learn more about the child(ren) for whom we are advocating with that disease/disorder, please email [email protected]. Thank you.Visit Our Waiting Child PhotolistingVisit a List of Rare Diseases to Learn More Read About The Experiences of Activists Who Live With Rare Diseases