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CRBF at BIO International Convention 2019!

“Wow.” That’s pretty much the word first time attendees at BIO’s annual convention use, a lot. With over 17,000 people from 49 states and 67 countries in attendance, and expo booths bigger and more plentiful than you can likely imagine, “wow” is what the convention does.

The BIO International Convention is hosted by Biotechnology Innovation Organization (BIO). BIO represents more than 1,100 biotechnology companies, academic institutions, biotechnology centers and related organizations across the United States and in more than thirty other nations.

This year, the massive convention was held in Philadelphia, home of CRBF President, Kristin Smedley. Kristin documented her attendance to give you an up close look at the convention and a bit of a window into how the CRBF networks to advance our mission.

First, the fun part of the convention: the Expo Center! Kristin’s says, “It. Was. Massive.” You have likely been to an expo style event before with booths big and small, right? The BIO Expo Center was filled with massive structures representing every country! Some were so big they had a stage in the “booth” for presentations. Others had configurations of couches, tables, and chairs for meetings. Many had snack bars and drink buffets. And much to Kristin’s delight, many had coffee stations!

Since Pennsylvania was the host of the convention, Life Sciences PA, the only life sciences trade association in Pennsylvania, hosted one of the biggest “pavilions” in the Expo Center. In the picture you can see the massive space full of functional meeting areas for people to get together. Kristin held several meetings there and it ended up being her “base camp” to meet up with rare disease advocacy colleagues from all over the country.

Life Sciences PA’s Pennsylvania Pavillion at #BIO2019

One of the most informative meetings Kristin held at that pavilion was with Advanta, a life sciences branding and marketing company. Kristin was captivated by Advanta’s knowledge of the life sciences work and passion to help companies and organizations build a brand and tell their story effectively to spread their missions more efficiently. Kristin and Steph (Advanta’s CEO) talked at length about using things like websites, media and literature to effectively spread a mission. Stay tuned for more on this meeting.

The biggest opportunity Kristin had while at the Life Sciences PA pavilion was only about 3 minutes long. Kristin got to meet and chat with the Governor of Pennsylvania, Tom Wolf. Kristin reports that that 3 minutes of incredible face time with the Governor was a testament to the power of being a part of an extraordinary organization. Imagine the scene: hundreds of people are in and around the pavilion when the Governor walks in with his staff, security, photographers, etc. A swarm of people gather as the CEO of Life Sciences PA welcomes him and they start chatting. Tons of people from the industry want a few minutes with the Governor. Many of them got that time.

But an interesting thing happened. You see, there is a lot of talk in this field about all of the work being “about the patient.” But so many times the patient is left out of pretty much everything. Things are getting better, and there are organizations and companies that are models of true patient centered work. Life Sciences PA is one of those organizations. CEO Chris Molineux saw Kristin Smedley standing in the crowd trying to get a minute with the Governor. He politely steered a few folks away and announced that while he was so proud of all the work being done in Pennsylvania, it is nothing without the patients we serve. Then, he introduced the Governor to Kristin, and she had a great conversation with him, thanking him for what is going well in PA in terms of the education of blind children. She then offered to talk with him at a later time about where she sees the need for a few improvements. The Governor was quite interested to learn more. Stay tuned for that follow up meeting.

PA Governor Tom Wolf talking with CRBF President Kristin Smedley

There were thousands of presentations, meet ups and connections at BIO 2019 and CRBF was involved in a lot of them. You’ll be seeing the impact of this convention on our work in the coming months. It was an extraordinary opportunity to be there and connect our mission to those that can help us grow.

If you would like to discuss ways to help our mission grow in research, fundraising, advocacy or outreach to the CRB1 patients, please send an email to

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