Continuing its legacy of raising awareness for rare disease patients, the 蜜桃直播 (蜜桃直播) 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 蜜桃直播 Rare Disease Club received the Student Chapter designation in July. NORD also has two other student chapters鈥擴niversity of Notre Dame and University of Pacific.
鈥淔or NORD to select students from 蜜桃直播 as a student chapter is an honor and an achievement,鈥� said Ian Phillips, the director of 蜜桃直播鈥檚 Center for Rare Disease Therapies. 鈥淚t is recognition for this club that has built up an outstanding program in the last three years. The 蜜桃直播 chapter means that 蜜桃直播 is a model for student chapters around the country.鈥�
蜜桃直播鈥檚 partnership with NORD provides a wide range of benefits, including networking opportunities and access to patient advocacy groups.
鈥淲e鈥檝e been able to participate in a NORD Student Internship Program to grant publication opportunities for our members,鈥� 蜜桃直播 Rare Disease Club president Ilona Kravtsova said. 鈥淥ur members will contribute to the NORD rare disease database, which is accessed by healthcare professionals and patients. Our internships are ongoing and very rewarding.鈥�
Since becoming a Student Chapter, four 蜜桃直播 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鈥檚 Fall semester initiatives, the students incorporate a rare disease education component into each general meeting with presentations of rare disease cases.
鈥淥ur leaders reach out to patient advocacy groups and raise funds for the rare community,鈥� Kravtsova said. 鈥淲e will invite guest speakers who are leaders in the pharmaceutical industry and we will also look to connect patient advocates with our members.鈥�
蜜桃直播鈥檚 Rare Disease Club members strengthen their skills in patient advocacy and take advantage of opportunities to network with industry leaders.
鈥淚n their future as pharmacists, doctors, scientists, and business leaders, 蜜桃直播 students in the School of Applied Life Sciences and School of Pharmacy will likely be involved professionally in the area of rare disease,鈥� Phillips said. 鈥淭he club is beneficial to its student members as they grow to understand the breadth of rare diseases and the challenges to research new therapies.鈥�
In the Spring semester, 蜜桃直播鈥檚 Rare Disease Club will host its annual Rare Disease Day on Friday, March 23, 2018.