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Disease center seeks awareness

Carolina Wilson | Monday, March 4, 2013

World Rare Disease Day took place Thursday and the University recognized the international event Feb. 23 with lectures and discussion panels, but Notre Dame offers a number of opportunities for students to be involved with rare disease studies throughout the year.

Marisa Truong, program coordinator for the Center for Rare and Neglected Diseases (CRND), said the Feb. 23 event aimed to encourage others to become interested and involved in the rare disease community.

“The goal of the event was to engage our students, faculty, patient families and our local community in a group discussion in order to find ways we can all collaborate to become better advocates for the rare disease community,” Truong said.

The program consisted of four discussion panels, which focused on rare disease research, ethical dilemmas within rare disease work, patient family stories and student outreach through Rare Health Exchange, a collaborative that allows undergraduates to assist researchers by defining natural histories of the diseases.

In hopes to increase awareness of rare and neglected diseases, CRND offers an undergraduate course titled “Developing Health Networks in Rare and Neglected Diseases.”

Truong said the course has developed into a student collaborative with the Rare Health Exchange. Students are trained to assess rare disease medical records in order to help physicians and researchers develop natural history studies for them.

“These studies are extremely useful for improving disease management, accelerating the time of diagnosis, and new drug development,” Truong said.

Additionally, the Center hosts a Clinical Translational Seminar Series in which distinguished professionals who work with the rare disease community are invited to showcase the type of rare disease work interested students could become involved with.

Patients and families directly affected by such diseases are also given the opportunity to share their story and raise awareness for the cause, Truong said.

“[In this] patient outreach component, students engage with patient families in order to help them submit medical records to us for assessment,” Truong said.

Truong said implementing rare disease education at the undergraduate university level is important. In this way, more of our communities are given an earlier exposure to the presence of rare diseases and can be informed of what they can do to help, she said.

“[Through undergraduate awareness programs] people are then exposed to a variety of ways they can continue to advocate for rare diseases and are made aware of the socioeconomic and cultural issues involved,” Truong said.