To raise awareness about the rare disease community and shed light on the multiple hardships of being afflicted with a rare disease, MSJ Students for Rare Diseases Club (SFR) hosted a Rare Disease Symposium on September 18 from 5-7 p.m. over Zoom.
The symposium featured eight panelists — one doctor, two researchers, two parents of rare disease patients, and three rare disease advocates — who shared their experiences and offered advice on advocacy and awareness efforts to the 20 attendees from across FUSD.
The club’s focus was to include diverse perspectives, featuring both advice from healthcare professionals and anecdotes from patients’ family members in an attempt to spotlight the variety of experiences that rare diseases can induce. Their meetings serve to educate students about rare diseases and plan fundraising events. The symposium kicked off with a short introduction from MSJ SFR President Senior Neha Gondra. Each panelist proceeded to speak about their place in the rare disease community, discussing their roles either as advocates and parents or researchers in the field before the Q&A session began.
During the Q&A session, Program Coordinator Jane Nicholson and Engagement Programs Senior Manager Hira Chowdhary — advocates from Global Genes, a nonprofit organization dedicated to streamlining information about rare diseases — discussed their role in connecting the families of rare disease patients with resources such as genetic testing options that are not as widely known in mainstream healthcare. “Only through advocacy can this kind of information be brought up to the public,” MSJ SFR Vice President Senior Divya Koya said.
Lafayette parent Aywon Nguyen, who has a son with Hunter Syndrome, a rare genetic disorder characterized by stunted development in children, and Rebecca Jordan, who has a daughter with Sanfilippo Syndrome, a hereditary disorder that affects the central nervous system, made the point that rare diseases are often difficult to diagnose since many doctors are not familiar with symptoms.
Similarly, Dr. Marie-Francoise Chesselet, a retired Emeritus Distinguished Professor of Neurology and Neurobiology at UCLA with 20 years of experience at the school, noted that there are very limited researchers in the rare disease community and few tangible treatments thus far.
While a few questions were oriented towards career paths and the logistics of rare disease-related healthcare professions, the panel also addressed how simply raising awareness as an advocate can benefit the rare diseases community. The panelists also spoke about the merits of assisting with fundraising initiatives whose proceeds go to rare disease research and advocacy.
“I wanted attendees to know that you can still help a medical community even if you aren’t planning on going into medicine,” Gondra said.
Although MSJ SFR has conducted advocacy and fundraising events such as mask drives and brief speaker panels in the past, the Rare Disease Symposium marked the club’s first official event. As a newly official club, MSJ SFR hopes to host more panels to promote discourse about rare diseases.
In the future, MSJ SFR is planning to hold virtual interactive sessions with rare disease patients. “Especially since [patients] aren’t learning or aren’t having the chance to connect and make friends with others, we want to be there for them as older students in the community.” Gondra said. Through their bi-weekly meetings and upcoming events, MSJ SFR hopes they can educate and encourage rare disease advocacy from students.
Cover Photo News Editor Alina Zeng