Rare Disease Day is just around the corner and it is a great day to devote to the knowledge of rare disorders in general, and congenital hyperinsulinism (HI), in particular. With the creation of this day, NORD and EURORDIS have done a fantastic job building a public awareness campaign about rare diseases. It is incumbent upon the entire rare disease community to be a part of this campaign. The NORD slogan is “Alone we are rare. Together we are strong.” I love this slogan because it underscores the importance of community in helping individuals. “Alone we are rare. Together we are strong. “ By joining with each other, one HI family with another, one rare disease community with another, we become a larger community and create the capacity to help individuals suffering from rare disorders.
There are so many potential projects for Rare Disease Day and NORD and EURORDIS have a number of fantastic suggestions on how to spend the day. Schools are a great place to start. Last year, my daughter, Hannah (in honor of her brother, Ben), and the students in her biology AP class each studied up on a rare disease and made Powerpoint presentations on these disorders for the 9th grade biology students. The project was a great success on many levels. A great number of students in the school started to develop an interest in rare diseases. Some of the students who were teachers for the day are even thinking about rare diseases as a career choice.
This year, organizing Rare Disease Day at school is far less daunting because NORD and NIH have now prepared special Rare Disease Day curricula for schools. These are available for you to bring to your local school district. Middle school and high school students can really take the initiative and bring these to their district. My niece, Gillian, is so excited about this project and is bringing the middle school curriculum to her middle school on Long Island.
Take a look at the attached link which will explain how you can connect to these curricula: http://rarediseaseday.us/take-action-now/in-school-activities/. While you’re at it, be sure to order your “Ben my sugar” t-shirts from our website to wear on Rare Disease Day. And don’t forget, we have them in French and Spanish, too! http://www.cafepress.com/congenitalhyperins.
