Today, members of the NORD staff had the opportunity to meet a group of high-school advocates who are already making a difference to help raise awareness for rare diseases.
The students are all members of the Rare Disease Awareness Group at Crosby High School in Waterbury, CT and decided to take a club field trip to NORD’s Danbury office to learn more about rare diseases and NORD, including through “rare disease jeopardy”. This group came together in 2011 when a teacher at the school, who is affected by a rare disease, planned a few different projects to help celebrate Rare Disease Day. One of these activities was a poster contest to highlight the theme that “everyone knows someone with a rare disease”. The contest turned out to be spot-on; a few motivated students came forward and the rare disease awareness group was formed.
Together, they had a vision of doing even more to raise awareness at the school, specifically by putting together a flash-mob, a feat they accomplished and captured on video in time for Rare Disease Day 2012. The momentum continued for Rare Disease Day 2013 as students spread the message not only at their school, but in the local community mall through an information table.
They also wrote, acted in, directed, and narrated a skit that told the story of a high-school student who was diagnosed with a rare disease and what he went through on that journey. Students around the room today shared with pride and excitement how they helped contribute to the video.
These students (and their adviser) really embody the spirit and potential of Rare Disease Day. The day is about coming together and identifying that everyone can play a role in raising awareness and that sometimes all you need to do is to step forward and ask in order to identify others who are interested in helping you. Their video also expresses another theme we hear over and over again: a rare disease can affect anyone at any age and you never know what you may go through in life.
It is clear that these students understand and can articulate the challenges of living with a rare disease. Students like this truly exemplify how a few motivated individuals can help raise awareness in their community for rare disease patients.