Day 30 ~ October 2014 as GLOBAL NPD Awareness Month ~ Patients Like Me Additional Details

Dear NNPDF Friends and Families,

Day 30 of our 2014 October GLOBAL Niemann-Pick Disease Awareness Month event, allows us to delve deeper into the PatientsLikeMe (PLM) program and share how it can be used to not only to benefit individual families on behalf of their loved ones diagnosed with NPD, but by our NPD scientists, researchers and doctors as well, who are working diligently towards finding a therapy for Niemann-Pick Disease.

The National Niemann-Pick Disease Foundation is partnering with PatientsLikeMe (PLM), to offer our NPD membership an additional tool to network and communicate with one another.  As social media resources continues to evolve, we have found that the current social media platforms which help us to connect our community (ie:  Facebook, Twitter, the NNPDF Yahoo List serve) don’t fulfill the medical and necessary privacy niche which the PLM platform does.  PatientsLikeMe is the first of its kind when it comes to understanding the medical side of a disease, tracking that information and compiling it into an understandable format for those who enter the database at a later date.  We envision the PLM site for Niemann-Pick Disease to become an essential tool for all of our NPD families ~ a go-to resource in how best to support their loved ones diagnosed with NPD.

For more information, visit the NNPDF Newsline web page: http://www.nnpdf.org/NewsLinePage.html#Oct30

Day 29 ~ October 2014 as GLOBAL NPD Awareness Month ~ Introduction to Patients Like Me

Dear NNPDF Families and Friends,

With only 3 days left until the end of our GLOBAL Niemann-Pick Disease Awareness month, the NNPDF would like to share a new social media website to our NPD community, called Patients Like Me, where our families can interact, gain support and share their experiences with one another in a private setting.

PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.

PLM will allow our NPD families to share information and build your loved ones health-history on-line and will assist us to build an on-line medical data site which more closely outlines and reflects the progression of Niemann-Pick Disease.  We will be providing more details and support information in the days to come.

Visit the NNPDF Newsline web page for more information: http://www.nnpdf.org/ASMDNews.html#Oct29

Day 28 ~ October 2014 as GLOBAL NPD Awareness Month ~ Think Again. Think NPC.

Dear NNPDF Families and Friends,

A major hurdle we learn of time and again from our NNPDF family membership is the challenge to a diagnosis. Due to this, Niemann-Pick Type C takes, on average, five years to diagnose. Because NPC is treatable this means that patients live for five years without treatment or access to support. 

Think Again. Think NP-C is a campaign identified and developed by the International Niemann-Pick Disease Alliance (INPDA), co-founded by the National Niemann-Pick Disease Foundation (NNPDF), to reduce the time to diagnosis by supporting healthcare professionals who are unfamiliar with NP-C to recognize the key signs and symptoms of the disease. This will help patients by speeding up diagnosis so patients can access treatment and support. 

Early diagnosis means patients can access support, which can improve their quality of life and the lives of those around them. Early diagnosis is also important as NP-C is a treatable disease. Treatment can help to manage the symptoms and can slow down the progression of the disease. 

Visit the NNPDF Newsline web page to learn more: http://www.nnpdf.org/NewsLinePage.html#Oct28

Day 27 ~ October 2014 as GLOBAL NPD Awareness Month ~ International Niemann-Pick Disease Registry

Dear NNPDF Families and Friends,

On the 27th day of our October 2014 GLOBAL Niemann-Pick Disease event, we are continuing with an introduction to the International Niemann-Pick Disease Alliance (INPDA). Today, Day 27, we turn our attention to another project being spearheaded by the INPDA ~ the NEW International Niemann-Pick Disease Registry (INPDR).

In 2013, the INPDA was awarded a grant in support of creating the FIRST International Niemann-Pick Disease Registry (INPDR) database ~ truly a new concept in rare disease registries which will improve the care of Niemann-Pick patients across the world.  The goal is for the INPDR to build and ultimately provide all with accurate numbers of those affected with NPD around the world, as well as, allowing patient advocacy groups globally to support a wider spectrum of families.

A registry is an important tool for collecting and recording information about a disease: how it affects and progresses in an individual patient and how it presents to those involved in diagnosis, treatment and research.

To view the full post, visit the NNPDF Newsline web page: http://www.nnpdf.org/NewsLinePage.html#Oct27

Day 26 ~ October 2014 as GLOBAL NPD Awareness Month ~ INPDA Key Projects

Dear NNPDF Families and Friends,

Today we're highlighting the key projects the International Niemann-Pick Disease Alliance (INPDA) are working on to not only assist with the over-all patient & family experience, but how working collaboratively with scientists, researchers and doctors could one day speed up the process of diagnosis.

Visit the Newsline for the full post: http://www.nnpdf.org/NewsLinePage.html#Oct26

Day 25 ~ October 2014 as GLOBAL NPD Awareness Month ~ International Niemann-Pick Disease Alliance (INPDA)

Dear NNPDF Families and Friends,

As we close out week four of our 2014 October GLOBAL Niemann-Pick Disease Awareness Month, we would like to turn our focus towards the GLOBAL impact that Niemann-Pick Disease (NPD) has as it affects individuals 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 who reach out to us for support, there are times where distance and language do become barriers in offering support for a specific NPD family need. 

Identifying that Niemann-Pick Disease doesn’t discriminate and is diagnosed around the world, the NNPDF and the NPD Group United Kingdom co-hosted the initial gathering of established international NPD patient advocacy groups.  From that initial meeting in October of 2009, the International Niemann-Pick Disease Alliance (INPDA) was formed. 

For more information on the INPDA, visit the NNPDF Newsline web page: http://www.nnpdf.org/NewsLinePage.html#Oct25

Day 24 ~ October 2014 as GLOBAL NPD Awareness Month ~ Genzyme ~ Camebridge, MA Offices ~ GLOBAL NPD Awareness Day

NEWSLINE:  Genzyme Pharmaceutical Main Offices ~ Cambridge, MA!

Genzyme Pharmaceutical employees and ASMD team leaders scheduled time to recognize October 2014 as GLOBAL Niemann-Pick Disease Awareness Month at their main offices in Cambridge, MA today (10/24/14).

Genzyme welcomed NNPDF Board of Director’s member, Eilssa Miller-Visoky, for special presentations and recognition throughout the day highlighting NPD patient advocacy efforts to raise awareness into Niemann-Pick Disease.

Elissa was was able to meet with Genzyme employees and ASMD team leaders at the Framingham, MA manufacturing plant, as well as, during a lunch reception at the Genzyme main offices in Cambridge to raise awareness for October 2014 GLOBAL Niemann-Pick Disease Awareness Month!

Visit the NNPDF Newsline web page for the full post: http://www.nnpdf.org/NewsLinePage.html#Oct24