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AVM Survivors Network

Arjuna would like some input from you. Yes YOU!

#1

Hello everyone

It’s not often that I get to introduce a very special member of the Ben’s Friends team with a unique and interesting project . Arjuna is one of our interns, a university student volunteer who is hoping to have a career in one of the medical professions. He has been doing an exceptional job on several of our communities greeting new members.

Imagine everyone’s excitement when we heard that Arjuna was planning a Ben’s Friends Rare Diseases conference at his university in Toronto! As part of the conference program, Arjuna would like to present some insights from our members.

Could you help Arjuna by answering a few questions? Your answers will provide interesting discussion material at the Rare Diseases Conference later this month.

Your participation will help aspiring medical professionals understand the unique challenges and problems facing people like us, whose lives have been touched by a rare disease or condition.

Thanks for whatever help you can give

Seenie from Moderator Support

Over to you, Arjuna!

2 Likes
#2

Thank you Seenie!!

Hello everyone! I’m Arjuna, a Ben’s Friends intern, and I want to raise awareness and funds for various rare diseases. I am the president of a student organization focused on achieving that goal, and one of our upcoming events is the inaugural Rare Disease Conference on March 10th at the University of Toronto. As part of the event, we will be providing a conference package to attendees.

We’re hoping to include some interviews with those 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?

We want to raise awareness about AVM! Feel free to reply to this post directly, or shoot me a private message with your response!!

Thank you,
Arjuna

#3

Message sent your way! Thanks and take care! John.

1 Like
#4

Arjuna, I would be happy to answers questions about my AVM in the Cerebellum. You can contact me at your convenience. I hope I’m not to late to participate. Talking about my AVM proves to me again and again, how blessed I am to be alive. I look forward to hearing from you.

Sharon D…