News

Join our Rare Disease Education Workshops from February 22-25 and learn more about rare diseases! Hear from prominent members from 4 esteemed rare disease organizations to learn more about the rare disease they represent and the type of work they're doing to help the cause. Scroll down to see which diseases will be represented at our event!

WHEN: February 22-25 from 3pm - 4pm

WHERE: 

Join Google Meet meeting

https://meet.google.com/air-txjw-pti

WHAT:

We've invited distinguished members of 4 rare disease organizations to talk about the rare diseases in which they help research and fundraise for. Learn about RASopathy disorders (Monday), Congenital Muscular Dystrophies (Tuesday), Phenylketonuria (Wednesday), and Neurodegeneration with Brain Iron Accumulation disorders (Thursday). They will discussing what each disease is, what their physiological effects are, what are the causes of each disease, and much more! In addition to this, they will be explaining what their organizations in particular are doing in order to help propel research and create supportive programs for those suffering from the diseases. Participants will then be able to ask them questions about the diseases and their work and then participate in fun Kahoot quizzes based on the presentations to win prizes!

WHO:

Monday:  Lisa Schoyer and Beth Stronach, PhD, the President and Board Secretary of the RASopathies Network

Tuesday: Avery Roberts, an Organization Volunteer from CureMCD

Wednesday: Rhonda Connolly, the President of the Children's PKU Network

Thursday: Veronica Bonfiglio, Board of Trustees Member of the NBIA Disorders Association

Questions?

Contact us via email at: msjsfr@gmail.com

Facebook Messenger: Reach out to MSJ Students for Rare Diseases

Instagram: @msjstudentsforrare

Website: msjsfr.wixsite.com/website

Come show your RARE and support rare disease education, awareness, and research by attending our Rare Disease Day workshops!