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Rare Disease Day Project Being Presented at NSGC Annual Educational Conference

Genetic Counseling Graduate Student Worked with NORD to Create High School Curriculum

Genetic Counseling Graduate Student Worked with NORD to Create High School Curriculum

DANBURY, CT, OCT. 25, 2012-----Julia Su, MS, a genetic counselor who worked with NORD to develop a high school curriculum supplement for Rare Disease Day 2012, is presenting a poster on this project at the 31st National Society of Genetic Counselors (NSGC) Annual Educational Conference in Boston this week.

Julia worked closely with Marsha Lanes, MS, CGC, NORD's genetic counselor, to research, write and pilot this curriculum for biology and health teachers.

"The idea for the project originated after NORD received inquiries from teachers about how they could incorporate Rare Disease Day, which is observed on the last day of February each year, into their classrooms," Lanes said.  "Just a few months later, Julia approached us with interest in working with NORD on her master's thesis project at Sarah Lawrence College."

NORD is the national sponsor in the U.S. for Rare Disease Day, which is observed around the world.  A primary purpose of the day is education and awareness.

"Genetic counselors often work with individuals and families with rare diseases in clinical or research settings so they are uniquely equipped to actively engage in promoting awareness and educating the public about rare diseases," Lanes said.  "High school students are an appropriate group to target for educational outreach because they are required to take biology, which usually includes a genetics component."

In preparation for development of the curriculum and in collaboration with NORD, Julia surveyed individuals with rare diseases, their family members, healthcare providers, researchers, and patient advocates to determine the most important challenges faced by the rare disease community.  The results of the survey, combined with a literature search, guided the development of curriculum content, which included an introduction to rare diseases, scientific background on various rare diseases, stories about the lives of individuals who have rare diseases, and the related ethical, legal, and social issues.

The curriculum supplement was downloaded 180 times from the national Rare Disease Day website ( from Dec. 1, 2011 to Feb. 29, 2012.  High school biology and health teachers across the U.S. used it in their classrooms on Rare Disease Day, and more than 600 students were reached.

Teachers who used the curriculum and completed the quality assessment survey gave very positive responses and comments.  "I think this is a great way to bring awareness of rare diseases to our students and expand their worldview a little bit more," one teacher wrote.  "Thank you for providing the curriculum!"

"It was truly a pleasure to work with Julia on this project, and we congratulate her on successful completion of her master's degree and presentation at the NSGC meeting," Lanes said.  "She is now employed as a genetic counselor at North York General Hospital and SickKids Hospital in Toronto."

NORD will again be sponsoring Rare Disease Day in the U.S. for 2013, and will be providing this and other materials for teachers to download for use in the classroom around that day.

Request a copy of the curriculum >

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