Hello! I’m Arjuna, a Ben’s Friends intern, and the co-president for the newly established University of Toronto chapter of Ben’s Friends Patient Communities. Our group aims to raise awareness and funds for Ben’s Friends and the various rare diseases in the wider Toronto area. One of our upcoming events is the inaugural Rare Disease Mini-Conference on March 10th. As part of the event, we will be providing a conference package to attendees.
We’re hoping to include some interviews with patients and volunteers who are part of the Ben’s Friends online support communities. Please let me know if you’re interested in sharing some of your unique perspective and experiences! Interviews will be only 2-3 questions and entirely at your discretion.
QUESTIONS:
- What is your rare disease, and how has it affected the way you live your life?
- Could you tell me a bit about your experience with the healthcare system, such as how your disease was diagnosed or treated?
- What do you think of the current state of knowledge and research on your particular rare disease? Where would you want it to go in the future?
- How has being involved with the Ben’s Friends community affected your experience as someone with a rare disease?
Questions for VOLUNTEERS
- What do you think of the current state of knowledge and research on your particular rare disease forum? Where would you want it to go in the future?
- How has being involved with the Ben’s Friends community affected your perspective on rare disease?"
Please feel free to reply under this post, or send me a private message! We would love to hear from you. We are trying to increase public awareness about Erythromelalgia, and your input will be much appreciated.
Best regards,
Arjuna
