~October 31st, 2013~
The International Niemann-Pick Disease AllianceDear Families and Friends,On the 31st day of our October NPD Awareness month events, we are highlighting the work of the International Niemann-Pick Disease Alliance (INPDA) based out of the United Kingdom.
As we wrap up October Niemann-Pick Disease Awareness Month, we would like to take the time to remind our community that Niemann-Pick Disease is a global disease, that affects people of all nationalities and in all countries around the globe.
While the NNPDF and CCNNPDF work diligently to extend support to any and all families that reach out and contact us, there are times where distance and language do become a barrier in supporting NPD family needs. For this, we are very grateful to have the International Niemann-Pick Disease Alliance, which helps us to bridge such gaps. The INPDA states that the group is an, "International response to a group of diseases that present challenges that cross all national boundries."
INPDA Members during the 2013 Family Support and Medical Conference
The International Niemann-Pick Disease Alliance was formed in October, 2009 with a view of providing a forum, where, through the exchange of information, experience and knowledge, progress could be accelerated.
In 2013 a grant was granted to the INPDA in support of creating the FIRST Niemann-Pick Disease International Registry database, which will help provide with accurate numbers of those affected with NPD around the world, as well as allowing us to support a wider spectrum of families.To learn more about the International Niemann-Pick Disease Alliance (INPDA): Click Here
Every day in the month of October we will be sharing fundraising ideas and highlight special events to keep the momentum going. The NNPDF is here to help and support you in these events ~ see all that the NNPDF has available to assist you here. So keep an eye on this web site and the Facebook Awareness Event page for the latest updates.
Remember that any events you are hosting for October can be sent to the NNPDF Central Office to be shared with the NPD Community. Contact: firstname.lastname@example.org .
Well NPD families and friends far and wide, we made it through another ~ "October as Niemann-Pick Disease Awareness Month"! It is exciting to note that during October 2013 we had higher levels of family enthusiasm and involvement from our NPD membership communities than we have ever had in the past. For this we are so very appreciative and grateful!
Thanks for being so tolerant of our daily updates and highlights ~ but ~ our goal was to reach out and share additional information about the work and goals of the foundation all in support of YOU ~ our NPD family membership!Once again, our appreciation runs deep as we continue to Persist in our Quest for a Cure!Nadine
[Oct 31st, 2013~nmh]