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Posted by on May 5, 2017 in Foundation NewsLine |

NNPDF Special Announcements

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Community Transition Update

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The NNPDF Board and Ad Hoc Transition Committee are delighted to report back on two very productive NPC and ASMD meetings in April.  Our findings indicate that there is enthusiastic support for the role of an unbiased patient support organization and for the reinvention of the National Niemann-Pick Disease Foundation’s vision. 

Our goal is to develop a reinvention plan that is realistic and has the needed tools for a more complex operation that provides an array of services focused on family support, education, and advocacy.  To do so, we need to restructure our governance and develop a community campaign and investment strategy, that will enable us to hire an experienced non-profit leader who will properly staff the organization. 

Over the past 7 months, we have accomplished a great deal and believe this transition time has been a necessary and valuable investment that will pay off in the long term for this reinvention plan. We believe this is a critical moment in our history for us to come together and embrace a new and hopeful vision for all families affected by Niemann-Pick diseases. We will be presenting our ideas for the future vision at the 25th Annual Family Conference in Rosemont, Illinois from August 10-13. It is our hope that you can all join us for this exciting time of gathering and rebuilding.  

At the conference, we will explore our shared values and develop the principles that we commit to as members. The conference program theme will focus on our future goals as a community, including family services, advocacy, the role of pharmaceutical companies, as well as updates. It will also include a greater focus on break out sessions that will be designed to support families in the daily challenges that come from living with NPD. More information on program details will be coming to you in the coming days before the conference. 

We also want to share some exciting news about the NNPDF partnership with the INPDA in the launch of the NPD registry. You can find more information about this at the end of this special announcement.  Please CLICK HERE if you’d like to sign up. Also, please remember to have your clinician fill out relevant information.

As many of you know, it takes a village and an investment to rebuild and take charge of our future. The past challenges have laid the groundwork for us to grow into a stronger community and patient group.  We look forward to working together to rebuild a support system that can meet families in their darkest hour and walk us together into a hopeful future.

Sincerely, 

Lisa Chavez
On behalf of the Board and Ad Hoc Transition Committee


25th Annual Family Conference

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We are delighted to share with you all that NNPDF will be hosting the 25th Annual Family Conference from August 10-13, 2017 at the Hilton Rosemont/Chicago O’Hare in Rosemont, Illinois just 20 miles from downtown Chicago. 

We will be sharing more information next week, along with links for registration and to reserve your hotel room, but wanted to confirm the date and location with you as soon as we could so you could begin making travel arrangements.

We are excited about this opportunity to gather once more and embrace a new and hopeful vision for all families. Come help us celebrate and honor the 25 years of strength and perseverance that so many have contributed to bringing us to this pivotal moment for our community!


International Niemann-Pick Disease
Registry Announcement

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INPDR
www.inpdr.org

A project initiated by the
“International Niemann-Pick Disease Alliance”

The INPDA and NNPDF are delighted to announce that the NNPDF will be acting as a co-coordinator for information and support for the roll-out of the International registry for NPD in the United States.

It has taken three years and $3m but the NPD world now has a truly international disease registry. This registry has been created by a consortium of NPD scientists, clinicians and patient organisations from around the World.  This registry is collecting data from clinicians and affected families.

Unlike most disease registries this registry is owned by the INPDA, a worldwide network of NPD patient support and advocacy foundations, and managed by a team of professionals. The objective of the registry is to facilitate progress by building knowledge about both ASMD and NPC. By understanding the natural history of these diseases it will be possible to evaluate therapies, manage and predict disease progression, recruit for trials and tailor treatments. In brief begin to understand more about these diseases.

The registry is now built and it will be launched in as many countries as possible throughout the World this year. The NPD patient support and advocacy groups will be receiving information about the roll out and will be in touch during 2017.

This initiative has the potential to significantly enhance progress and make a real difference to those affected by Niemann-Pick Disease.