In February 2018, I contacted the National Institutes of Health regarding their upcoming March 1, 2018 Rare Diseases Day conference. They offered us an opportunity to display a poster explaining TGA and to have an information table at that conference to introduce the TGA Project 2018 community to the larger global rare diseases community.

 

From that simple homemade info booth came such an awesome outpouring of support that we were invited to attend the World Orphan Drug Congress 2018 (WODC) in Washington April 25-27, 2018. The WODC was organized by Terrapinn Global Events, Inc. It was their staff at the Rare Diseases Day that offered us two delegate passes at no charge to assist us in our mission. Their pre-conference web site allowed 20 minute face-to-face speed networking meetings to be arranged ahead of the conference.

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Understanding the Impact of Arranged Meetings:

As a new patient advocacy group, the TGA Project has entered a realm that wasn’t expected. The conference format consisted of a pre-conference day of seminars after the opening remarks and introductions. The second day was filled with more seminars and the pre-arranged meetings. The final day had three components: follow-up or re-scheduled face-to-face meetings, more seminars, and time to explore the various vendor exhibits. The overall program had seven tracks:

1. Clinical Development

2. Commercial Track

3. Global Market Access

4. Gene Track

5. Rare Disease Advocacy

6. Pitch/Partner

7. International Patient Group Sessions

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Opportunities for TGA Project to Establish New Relationships with International Patient Advocacy Umbrella Groups and Specific Rare Disease Organizations:

When we met the Terrapinn staff at the March 1st Rare Diseases Day, their suggestion was to leave our display booth home and attend as delegates to free our time blocks. We followed their suggestion and we were very thankful that we did. This schedule allowed us flexibility that manning a booth wouldn’t. That was the key to our successful 3 days of networking.

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Summary of Day 1:

Registration and check-in

Opening remarks

Morning seminars: patient registry and legislative updates

Vendor displays and exhibits

Face-to-face meetings:

Finland with Katri Asikaninen

Bulgaria with Vladimir Tomov

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Summary of Day 2:

Face-to-Face Meetings:

Canada w/ Dunhane Wong-Rieger

South Africa w/ Helen Malherbe

Columbia w/ Angela Chavez

Brazil w/ Gustavo San Martin

India w/ Harsha Rajasimha

China w/ Kevin Huang

Japan w/ Yukiko Nishimira

Denmark w/ Birthe Byskov Holm

Sweden w/ Beata Ferencz

UK w/ Alastair Kent

Russia w/ Denis Belyakov

Malaysia w/ Sook Yee Lim

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Summary of Day 3:

We had a few rescheduled meetings and plenty of time to visit the various vendor exhibits. The Terrapinn staff was great to all of us in helping to shuffle reschedules and table assignments via their email and texting system that we logged into every morning for ongoing changes. The vendor exhibits were far more advanced than our 7 months of growth. We had prepared a 10 page white paper portfolio as our primary handout. We also had a simple tri-fold brochure and colorful business cards for exchanging. The vendors treated us as welcomed guests with genuine concern for our new community. There were free goodies, brochures, catalogs, and lots of candy; but the time each vendor took with us as we made our rounds the three days was impressive. Many of the vendors would see us several times a day in passing and would check to see how we were fairing or would introduce us to someone they felt we should meet.

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Location of the Conference:

Gaylord Resort National Harbor, Washington, DC

Grand Ballroom, adjoining meeting rooms, and main balcony overlooking the Potomac

Our favorite location – the seating area of the Maxifying Life networking area

As we stayed off-site with family, we did not experience the hotel accommodations

Breakfast and lunch buffets were free all 3 days

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In Closing:

Terrapinn Staff: Semen Sen, Daniel Friedman, Claire Murphy, Fred, Joe, etc. were exceptional in providing us a networking opportunity to us that was priceless. The logo “Spark Something” is just what our newly formed TGA community needed. Email thank you notes have been sent and follow-up conversations are underway.