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KGI Rare Disease Club Founders Are Helping NORD Inspire and Educate Others

The newly formed Keck Graduate Institute (KGI) Rare Disease Club is helping the National Organization for Rare Disorders (NORD) inspire students at other campuses across the U.S. to establish similar clubs for rare-disease awareness and education.

NORD, the leading independent nonprofit organization dedicated to the identification, treatment and cure of rare medical conditions, recently featured a story about the KGI Rare Disease Club in the first issue of its new student newsletter. The co-founders of the club, Caroline Kim and Anderson Van, who are KGI School of Pharmacy students, also provided tips published in the newsletter to help students at other institutions establish clubs based on the KGI model.

“Education about rare diseases is critical to NORD’s mission,” says Mary Dunkle, NORD’s vice president of educational initiatives. “And education of students, particularly those planning healthcare-related careers, is one of our top priorities at this time. We’re very impressed with what the students at KGI are doing, and we wanted to share their experiences with others who may be inspired to do something similar.”

A federation of more than 230 member organizations representing specific rare disease communities, NORD has been providing programs of education, advocacy, research, and patient services for the rare disease community since 1983. While NORD has long been involved in promoting rare disease awareness, it has recently launched new and expanded programs of outreach to medical professionals and students preparing for healthcare careers.

“Students are the future for our patients and families,” Dunkle said. “It is exciting to us to work with students who are eager to learn about rare diseases. We are grateful for the efforts of those, like Caroline and Anderson, who understand the challenges and want to help build a better future for this underserved community.”

Dunkle notes that the interaction with the club builds on a close relationship between KGI and NORD. KGI President Sheldon M. Shuster currently serves as vice chair of NORD’s board of trustees, the two organizations have partnered on past projects, and KGI students have held internships at NORD’s Connecticut headquarters.

Formally established in February, KGI’s Rare Disease Club has already attracted more than 40 student members from both the School of Pharmacy and School of Applied Life Sciences. Its goals are to increase awareness, establish professional relationships and partnerships, provide education, and promote career opportunities related to rare diseases.

“We want to inform the public, pharmaceutical companies, and healthcare professionals that rare diseases should not be neglected,” says Kim, who serves as president of the KGI club. “As students, we have the ability to shape the future.”

Van, who is vice president of the club, notes that the KGI club and NORD form a natural partnership. “Both of our organizations have the same motivation. We’re providing NORD with an extension of its network and another perspective.”

The two students are also pursuing opportunities for the club to work with other organizations interested in enhancing understanding of rare diseases and improving the lives of people who suffer from them. These organizations include the Specialty Pharma Education Center, which provides medical, pharmacy, and nursing continuing education, as well as patient education programs; Global Genes, a nonprofit focused on rare disease patient advocacy; and Sarepta Therapeutics, a biopharmaceutical company.

NORD and Global Genes participated in the club’s first event, a poster day on April 27. The event made a great first impression on the KGI community as well as the partnering organizations. Over 70 guests attended the event and 16 contestants participated in the poster presentations. Global Genes shared their outlook on the future role rare diseases play within non-profit organizations. Also, Dr. Ian Phillips, director of the Center for Rare Disease Therapies, gave a presentation on The Center for Rare Disease Therapies at KGI and what it has achieved. NORD shared valuable resources hoping to increase awareness of rare disorders.

About the National Organization for Rare Disorders (NORD) ® Established in 1983, the National Organization for Rare Disorders (NORD) ® is the primary nonprofit organization representing all patients and families affected by rare diseases in the U.S.  NORD is committed to the identification, treatment, and cure of all 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.  NORD provides programs of advocacy, education, research, and patient/family services to improve the lives of all people living with rare diseases. NORD represents more than 230 disease-specific member organizations and collaborates with many other organizations in specific causes of importance to the rare disease patient community. Join NORD at www.rarediseases.org/ and on Twitter at @RareDiseases.