EB World Congress London 2020

EB World Congress 2020 London

January 19-23 2020 in London, UK

Melissa the Founder of MiaThrives and Creative Director Emily had the amazing opportunity to attend the first-ever Global EB World Congress. Over 700 people attended from around the world, and we were able to gain new knowledge about EB, discover research and treatments, and connect with the community.

For more information click here.

To listen to the MiaThrives Podcast- Episode 4 on the EBWC click here.

 

Brief Breakdown

The event started with an update on EB classification and new subtypes. The first three days focused on doctors and researchers sharing their data, research findings, studies, and new treatments for EB. It brought us a lot of hope to see what should be available for the EB community in the future. Many of the studies have had positive results and are pending approval to move into production.

During coffee breaks and lunchtime, a lot of information was also shared via posters and displays from various organizations. This was also a time to connect with Debra teams from around the world, as well as various non-profits and medical companies.

MiaThrives was able to attend the Debra International dinner. During the dinner, we received significant insight into the fundraising and awareness Debra is spreading worldwide.

To learn more about Debra International click here. 

 

Melissa of MiaThrives at EB world congressEB world congress

 

Community Day

Day 4 of the event focused on the EB Community. Some speakers had EB themselves and they shared their personal experiences. This brought up interesting conversations during the panel discussions that followed the speeches. More families and members of the community came to London just to attend the last day of the EB World Congress. It was such a wonderful experience to connect with members of the community that we knew from the EB Facebook Lounges but were never able to meet in person. Getting together gave us the opportunity to have deeper and more meaningful conversations about day to day life with EB.

 

Seeing Familiar Faces!

We were proud to represent Canada, along with doctors from the Sick Kids Hospital EB Clinic and Debra Canada board members. It was also wonderful to meet up with a personal friend, and one of the Kaleidoscope Gala Speakers, Lucy Beall Lott!

 

EB Hacks

Before heading back to Canada we were able to film 3 new EB Hacks episodes. Stay tuned for more coming weekly!

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