2022 - 2023
September
College Day-College of Biological Sciences (CBS) Involvement Fair
We were at College Day at the CBS Involvement Fair in the Mississippi Room at Coffman Memorial Union from 3:00-4:00pm on Thursday, September 1st to connect with CBS students about involvement in our club and the Rare Disease community!
ExploreU
We had a booth at ExploreU at Huntington Bank Stadium from 1:00-4:30pm on Saturday, September 3rd where we shared more about our chapter of NORD Students for Rare and our mission!
Root Beer Floats & Rare Diseases (Welcome Event 2022)
Our first official club event of the semester was on Wednesday, September 14th from 7:00-8:00pm in HSEC 2-138. We introduced our club, our mission, and our board, and then played Rare Disease Jeopardy and enjoyed root beer floats while getting to know fellow members and learning about rare diseases!
Patient-Centered Care with Dr. Paul Orchard
On September 28th we learned about patient-centered care in the context of rare diseases. We were joined by Dr. Paul Orchard, who is the Medical director of the Inherited Metabolic and Storage Disease Program, a Pediatric Blood and Marrow Transplant Physician, and a professor in the Department of Pediatric Division of Blood and Marrow Transplant & Cellular Therapy. He focuses on the use of hematopoietic stem cell transplantation (HSCT) and the treatment of inherited metabolic disorders. He spoke to us about his experience in the field and what it is like to care for rare disease patients who come to see him from around the world.
October
Medical Ethics Workshop with Dr. Michael Bryant
On October 12th, NORD SFR hosted a Medical Ethics Workshop in collaboration with the Emergency Physicians Professional Association (EPPA) where Dr. Michael Bryant lead a presentation and discussion about ethical decision making in healthcare situations. We learned a lot about the principles of ethics and how we each might respond to ethical dilemmas we are faced with as future healthcare providers.
A Deep Dive into Ehlers-Danlos Syndrome
We hosted an event on October 26th focused on Ehlers-Danlos Syndrome, which is the original rare disease to use the zebra as a mascot for recognition and advocacy efforts! We learned about the many disorders that fall into the EDS category, the pathophysiology behind them, and caring for EDS patients!
November
NMOSD with Alexion, AstraZeneca Rare Disease Pharmaceuticals
November 9th from 7:00-8:00pm in HSEC 2-138
Hot Chocolate and Huntington's Disease
November 30th from 7:00-8:00pm in HSEC 2-138