Chelsea Wong

Youth Coordinator

Chelsea Wong

Rare Youth Monologues

Sometimes we just need to stop and listen. Three young people will take to the stage to share their experiences of living with a rare condition in this unique spoken word performance. Followed by a chat facilitated by Dr Lucy McKay from Medics4RareDiseases.

Chelsea (22) is the Youth Coordinator for RARE Youth Revolution. Recently graduated with a Business Management and Psychology degree, she loves advocating for things she is passionate about, such as rare disease, stopping racism and raising awareness about sexuality. Diagnosed with Lupus at 14 years old and later Lymphopenia and Hypermobility, she uses her experiences to share what it’s like living with a rare disease. She is incredibly excited to be attending RAREfest by representing the Youth Team with her idea for their exhibit and collaborating with M4RD to create Rare Monologues, where she will be one of the performers.

My three wishes for the future of rare disease are:

  • For people to stop underestimating the patient
  • For healthcare professionals to listen to us
  • To stop seeing us as people who are sad all the time and can’t have hopes, hobbies and passions.