SPHS 10 13 17 Rare Disease

Rare Disease Club Expands Impact as NORD Student Chapter

Continuing its legacy of raising awareness for rare disease patients, the Keck Graduate Institute (KGI) Rare Disease Club is now making an even bigger impact after becoming a Student Chapter of the National Organization for Rare Disorders (NORD).

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

The KGI Rare Disease Club received the Student Chapter designation in July. NORD also has two other student chapters—University of Notre Dame and University of Pacific.

“For NORD to select students from KGI as a student chapter is an honor and an achievement,” said Ian Phillips, the director of KGI’s Center for Rare Disease Therapies. “It is recognition for this club that has built up an outstanding program in the last three years. The KGI chapter means that KGI is a model for student chapters around the country.”

KGI’s partnership with NORD provides a wide range of benefits, including networking opportunities and access to patient advocacy groups.

“We’ve been able to participate in a NORD Student Internship Program to grant publication opportunities for our members,” KGI Rare Disease Club president Ilona Kravtsova said. “Our members will contribute to the NORD rare disease database, which is accessed by healthcare professionals and patients. Our internships are ongoing and very rewarding.”

Since becoming a Student Chapter, four KGI members have received full scholarships to attend the national Summit Conference in Washington, D.C., and two posters were accepted for presentation.

As part of the club’s Fall semester initiatives, the students incorporate a rare disease education component into each general meeting with presentations of rare disease cases.

“Our leaders reach out to patient advocacy groups and raise funds for the rare community,” Kravtsova said. “We will invite guest speakers who are leaders in the pharmaceutical industry and we will also look to connect patient advocates with our members.”

KGI’s Rare Disease Club members strengthen their skills in patient advocacy and take advantage of opportunities to network with industry leaders.

“In their future as pharmacists, doctors, scientists, and business leaders, KGI students in the School of Applied Life Sciences and School of Pharmacy will likely be involved professionally in the area of rare disease,” Phillips said. “The club is beneficial to its student members as they grow to understand the breadth of rare diseases and the challenges to research new therapies.”

In the Spring semester, KGI’s Rare Disease Club will host its annual Rare Disease Day on Friday, March 23, 2018.