Largest Ever Inhibitor Meeting

The Novo Nordisk Dallas Inhibitor Education Summit was the largest ever gathering of inhibitor patients in the world–very impressive! Over 75 families attended. In the US, there are only about 1200 people with inhibitors. Trying to get this small group together for weekend is not easy, but they came from Wisconsin, Massachusetts, Florida, California and Pennsylvania, as well as many other states. It was great to see both old friends and make some new friends.

On Friday, I facilitated the Novo Nordisk Consumer Council Meeting, which brought together for the last time a team I have worked with for two years. Our role is to offer feedback to the marketing team at Novo Nordisk about product enhancement, educational materials, and needs in the inhibitor community. We also reviewed the first winner of the Uninhibited Achievement Award, Mike McNamara, whom we had all selected at a previous webcast conference. Gar Park of Novo Nordisk reviewed our achievements of the past two years, and they were amazing! I think of all the consumer advisory groups I’ve worked with or facilitated this has been the most productive.

There were lots of tears shed when parting came (right, Theresa?), and we are now accepting applications for the next two years. If you know anyone with inhibitors or is a caregiver of a person with inhibitors who might be eligible and available, please let us know! We will need about 10 new council members.

The rest of the weekend was a series of excellent lectures and panel discussions on topics ranging from factor IX and inhibitors (an incredibly rare combo) to pain meds to advocacy. Excellent speakers, audience participation and flawless event planning by Cadent Medical made for a memorable weekend.

Next year the Summits will be held, but maybe with some changes in venue and direction. Be sure to check with both the NHF and HFA to learn where and when they will be held. If you have inhibitors, you will not want to miss these! All travel expenses have been paid by Novo Nordisk so it will cost you nothing to attend, and you have everything to gain!

(Photos: top down, Panel discussion; Consumer Council at Work; Mario and his mom, from San Antonio; Laurie with Deena and son Tyler; Jessica and Kerry; Laurie and Kerry with Cowboy Jim!)