The next Neutropenia Family Conference will take place in the summer of 2014 in Ann Arbor, Michigan. The specific dates and host hotel will be announced this fall. Keep checking the website for updates.
The 2012 Family Conference, held at the beautiful Double Tree Paradise Valley Resort in Scottsdale Arizona was a huge success with the highest ratings ever.
The agenda was packed with programs covering all aspects of neutropenia including: the basic function of the neutrophil, a detailed description of the various types of neutropenia, the latest information on dosing, bone marrow transplantation, osteopenia, oral health and four breakout sessions covering cyclic, congenital, idiopathic and autoimmune neutropenias. New sessions addressing nutrition, stress management, infection prevention and communicating with your physician were big hits and will be included in future conferences.
Hematologists from the Severe Chronic Neutropenia International Registry advisory board consulted with over twenty four patients in private one-on-one sessions. Many of these patients returned home with new ideas about managing their neutropenia to share with their hometown physicians.
On Saturday afternoon we added an interactive session for patients only. For many it was the first time they’d ever met another person with neutropenia. Attendees were deeply grateful for the chance to spend time sharing their trials, challenges, and successes among a group of peers without having to worry about the response of a spouse, parent or caregiver. One person said, “For me this session was a game changer.”
For many, networking with others “who understand me” and meeting with expert physicians in a casual, friendly setting was the highlight of the weekend. As one mother said, “Our feeling of isolation as a family is over. It was eye opening experience and made us feel like part of a community.”
We know two years can be a long time to wait for another chance to attend a Family Conference. In the interim the NNN will be working to keep patients informed, add new programs and respond to the needs of the neutopenic community. Please visit us often and don’t hesitate to contact us.
