Rare Disease Summit June 2019

Living with a disability has its challenges, but there are also moments when the journey that comes with a diagnosis can turn into something empowering, and I want to give a special shoutout to Ann Wolfe for making this magic moment happen!

This past month, I had the privilege of joining a panel of five participants to discuss the complexities of patient advocacy of the disability and chronic illness community at the Rare Disease Innovation and Partnering Summit in Boston. 

The summit included panel discussions, networking opportunities, demonstrations and treatment resource stations and so much more. People from all over the country and world were present to get more information and meet other people who suffer from or support someone who suffers from a rare disease. 

 

I was humbled to be asked a second time to participate in this conference and couldn’t wait to share my perspective on the challenges myself and many of those with Limb-Girdle Muscular Dystrophy face on a daily basis. I’ve shared in my previous posts on the misconceptions of living with a disability as well as the many other topics like choosing the right doctor and traveling comfortably, that everyday life isn’t as simple as it used to be; and being able to help other people understand what their loved ones go through or feel like someone understands their pain, was the highlight of my time at the conference.

Along with my panel and other activities, summit attendees also had a chance to participate in a question and answer session with doctors on topics like treatment options, genetic testing and other areas of patient improvement and care.

Aside from the awesome opportunity to share my story, I really enjoyed meeting new people and making connections from summit attendees and vendors throughout the day. If you haven’t thought about or explored the possibility of attending a summit or conference related to the disability, chronic illness you or a loved one might be experiencing, I really encourage you to give it a try! Before my diagnosis, I didn’t even realize events like this existed, but now that I do, I’m going to commit to showing up and getting the information and connections I need to stay up to date on what’s going on the rare disease community beyond my local community.

If you’re interested in learning more about the Rare Disease Summit, visit their site here and get plugged into an amazing resource and event.

 

 

 

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