Message From the NNPDF Board of Directors
Dear NPD Families and Community,
Your input over the course of this past year, and at the NNPDF Family Conference has been essential to moving us toward reinvention. Many people have worked hard to get us here, where we can come together to rebuild the NNPDF and work collectively to find common ground.
In our last NNPDF update, we shared that the family conference was well received and that the feedback was very positive and constructive. Fifty-one family members participated in the vision break out groups; 100% of the participants agreed in principle with the future NNPDF vision as outlined in the document that we shared. Below you will find a draft of the vision for the future and the feedback from each of the five groups. You will also find feedback from the reinvention panel discussion and the conference survey. As a number of you requested, we have uploaded three videos from our Friday conference program.
At the conference Reinvention Panel, we discussed that it will take resources to build a strong community organization that serves the larger needs and acts as a voice for all families. We also shared information on a reinvention campaign we have designed that we will be launching in October 2017. We have named it the Vision of Hope Campaign – Meeting the Needs of Today. We will be sharing with you why the Vision of Hope will set a new course for our community, how to support the Vision of Hope Campaign and how to get your questions answered.
Our collective hard work as a community has led us to where we are today. We have set up a Reinvention Advisory Committee to help guide us through our next steps and build an organization that better meets the needs of today. The members of the Reinvention Advisory Committee include: Lisa Chavez, Co-Chair, Dr. Andy Lieberman, Co-Chair, Dr. Marc Patterson, Dr. Ed Schuchman, Dr. Justin Hopkin, Jill Flinton, Jamie Ring, Barbara Wedehase, Michelle Davis and Amy Kant. For more information about the Reinvention Advisory Committee members click here.
Below we have developed the following overview of the transition activities that we have been engaged in from October 2016 – May 2017. Also included is an overview of the reinvention activities that we started in July of 2017 and that will be continuing over the coming months.
2017 Family Conference Summary
- Dr. Marc Patterson Reinvention Message
- Dr. Ed Schuchman Reinvention Message
- PANEL 1: Advocacy and the Role of Patient Support Organizations with Industry Partners
- PANEL 2: The Importance of Unbiased Clinical Perspectives and Patient Engagement
- PANEL 3: Understanding Leadership of Patient and Family Support Organizations