Current Officers:RareND has been recognized by the Student Activities Office (SAO) as an official University student club as of March, 2016.
President: Will Langbo
Secretary: Jeff Girardot
Treasurer: Madeline Moeller
Social Media Coordinator: Tori Ruesch
Fundraising Commissioner: Katie Purk
Apparel and Marketing Commissioner: Alex Richard
RareND raises awareness and education with rare disease patients, their service organzations, caregivers and researchers (on-campus patient engagement is supported by Nurse Calhoun, CRND). They volunteer in local clinics with medically fragile children. Check out the full range of activities on Facebook (Rare ND)!
The club aims to develop student initiatives oriented to spreading awareness and recognition of rare diseases. RareND will work towards its goals by:
A. Coordinating discussion-based meetings with club members, student leaders, and faculty on rare disease topics.
B. Developing events such as fundraisers and contests to spread awareness to undergraduate students.
C. Collaborate with professionals in the rare disease field to organize a research conference.
If you are interested in becoming a member of the RareND Club or would like more information, please email Barb Calhoun at firstname.lastname@example.org
Please come back for updates on events!
Local Middle School Students Visit Notre Dame to Learn about Rare Diseases
On Thursday March 6th, a group of students from Lake Shore Middle School student council visited Notre Dame to learn about rare diseases. The students had lunch with Dean Greg Crawford (College of Science) and toured the Notre Dame campus. During their visit at CRND, Notre Dame students from the RareND club demonstrated how difficult it can be for rare disease patients to find diagnosis and expert care through an interactive game.
Dr. Md. Suhail Alam (Haldar lab) introduced the students to his research in Niemann-Pick Type C (NPC) disease, which is a neurodegenerative rare disease that affects children and teens. A discussion between the visiting students and Notre Dame researchers demonstrated how interested and enthusiastic they are about learning and raising awareness for rare diseases. They also shared their plans for a 5K fundraising marathon to benefit rare disease awareness.