January – February 2022 Newsletter
News & Events > Newsletters Message from the Executive Director | Rare Disease Week | Rare Disease DayTaking the Lead with ASMD – Sanofi Presentation | NNPDF In Action | Thank You Kara AyikHelp for the Holidays Update | Duke-Margolis NPC Public Workshop UpdateJoele Ruppert & Joseph Colton ASMD Scholarship | Volunteer OpportunitiesNNPDF Research Fellowship […]
A Message from Cara Gilmore
https://vimeo.com/672886018 Stay Connected. Stay Informed. Become an NNPDF member for the latest research updates, event invitations, and a direct line to the community. BECOME A MEMBER TODAY
In the Spotlight with Ashley Lewis
DECEMBER 2021 Ashley Lewis Mom of Linwood, ASMD Tell us a bit about yourself and your family…We are the Lewis’s!! We live in beautiful North Carolina, in the town where my husband, Lyn grew up. Tarboro is a small town like you see in the movies, where everyone knows everyone. We love spending time with […]
Message from the Executive Director
DECEMBER 2021 Dear NNPDF Community, As we approach the end of 2021, this is a perfect time to reflect on the progress we have made this year in the Niemann-Pick community and to outline some important goals for 2022. Over the past several months, the National Niemann-Pick Disease Foundation has been working in many ways […]
December 2021 Newsletter
News & Events > Newsletters Message from the Executive Director | 2021 RemembrancesShop AmazonSmile | Milestones | In the Spotlight | Invisible MannersCommunity Update Webinar Series | 2022 Family ConferenceAllStripes NPC Research Program | Truly Global Recognition for Rare DiseasesFundraising | Family Journey | Clinical Trial Update | Community News UpdatesMembership | Comprehensive Care CentersEmergency […]
November 2021 Newsletter
News & Events > Newsletters Message from the Executive Director | Niemann-Pick Awareness MonthHelp for the Holidays | In the Spotlight | 2022 Family ConferenceGiving Tuesday | Coffee & Catching Up | Newborn Screening UpdateCommunity Update Webinar Series | NNPDF In Action | AmazonSmilePatients Waiting NPC Video | Fundraising | Family JourneyClinical Trial Update | […]
All States Must Recognize That Rare Diseases ARE Different
In the weeks ahead, Wisconsin will consider legislation to establish a “rare disease advisory council” in the state. With this important action, Wisconsin could become the 22nd state in the U.S. to acknowledge that patients and families affected by rare diseases have many unique needs and deserve support and services that are designed to meet […]
Scientific Reports: Impact and burden of acid sphingomyelinase deficiency from a patient and caregiver perspective
NNPDF’s Justin Hopkin, Board Chair and Joslyn Crowe, Executive Director co-authored the recently published article in Scientific Reports titled “Impact and burden of acid sphingomyelinase deficiency from a patient and caregiver perspective”. Read complete article. Stay Connected. Stay Informed. Become an NNPDF member for the latest research updates, event invitations, and a direct line to […]
AllStripes NPC Sibling Research Study
https://vimeo.com/640492770 Stay Connected. Stay Informed. Become an NNPDF member for the latest research updates, event invitations, and a direct line to the community. BECOME A MEMBER TODAY
Awareness, innovation shape future for those living with rare disease, ASMD
PAID FOR BY SANOFI GENZYME Awareness, innovation shape future for those living with rare disease, ASMD When April talks about going on dates with her husband, Chris, or watching fireflies with their 6-year-old son, Nicholas, she radiates in such a way that all but betrays the battle happening inside her body. But as the Texas […]