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Newsletters

November 2021 Newsletter

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
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September – October 2021 News

Message from the Executive Director  |  Niemann-Pick Awareness MonthNPC-FDA Listening Session Summary Report  |  NPC Virtual Hill DayLiz Heinze – NNPDF Secretary  |  2022 Family Support & Medical ConferenceHealth Care
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July-August 2021 News

Message from the Executive Director  | Family Support & Medical ConferenceINPDA Biennial Meeting  |  Getting to Know Your NNPDF BoardMessage from NNPDF on FDA Meeting  |  SpotlightHow to Communicate Your Message to the Media  |  Justin
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June 2021 News

Message from the Executive Director  | Family Support & Medical ConferenceNNPDF Welcomes New Board Members  |  Thank You Missy Ward  |  New Advocacy CommitteeMembership Update  |  ASMD Scholarship Opportunity  |  Milestones  |  INPDR UpdateASMD Market Research Opportunity 
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May 2021

Message from the Executive Director Dear NNPDF Community, As a rare disease community, we are stronger together. Recently we have seen the impact that our collective voices and collaboration can
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April 2021

Message from the Vice Chair Dear NNPDF Community, On behalf of the NNPDF we would like to first and foremost thank those that participated and supported our FDA Listening Session
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March 2021

Message from the Board Chair NNPDF Community, I appreciate the opportunity to bring you the Spring edition of the NNPDF Board Chair update. As the world looks to rebound from
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February 2021

Message from the Executive Director Dear NNPDF Friends and Family, Rare Disease Day is approaching.  On February 28th, families from around the world join together as one voice. Throughout the
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January 2021

Message from the Executive Director Dear NNPDF Friends and Family, The first month of 2021 brought hope to some of our families yet fear and uncertainty to others in the
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December 2020

Message from the Executive Director Dear NNPDF Friends and Family, December brings a lot of reflection. A review of the year, it’s ups and downs, and a time to pause
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November 2020

Message from the Executive Director Dear NNPDF Friends and Family, Thanksgiving is almost here and while this year’s gatherings will be smaller and quieter than normal, the pause we take
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October 2020

Message from the Executive Director Dear NNPDF Friends and Family, October is Niemann-Pick Awareness month and throughout this month NNPDF has been raising awareness of Niemann-Pick disease through media interviews,
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September 2020

September is Newborn Screening Awareness Month In recognition of Newborn Screening Awareness Month we are sharing the Firefly Fund’s September Firefly Chat, which is sharing a recent discussion from the
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August 2020

Message from the Executive Director Dear Friends, As summer comes to an end many of our families are starting a new school year and adapting to distance learning, hybrid schedules,
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July 2020

NNPDF Family Support & Medical Conference Recap Thank you to the 290 participants who joined us for this year’s virtual conference weekend! Our speakers, break out session leaders, and family
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June 2020

Message from the Executive Director Dear Friends, The past few months presented unexpected challenges for our community.  COVID19 forced us to make changes to our daily life, learn new phrases
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May 2020

Message from the Executive Director Dear Friends, I’m excited to announce that the NNPDF Conference website and registration for the 2020 NNPDF Family Support and Medical Conference are OPEN! As
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April 2020

Message from the Executive Director Dear Friends, The month of April has been filled with challenges that we couldn’t have imagined only a few months ago. Keeping our families healthy
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March 2020

Message from the Executive Director Dear Friends and Families, The world has changed a great deal since our last Newsletter. The COVID19 pandemic is creating unprecedented challenges in our daily
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February 2020

Message from the Board Chair NNPDF Community, Recently NNPDF Executive Director, Joslyn Crowe, and I attended the annual WORLD (We’re Organizing Research on Lysosomal Diseases) scientific meeting. This 16th annual
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January 2020

Message from the Executive Director Dear Friends and Families, As the new year begins, we at NNPDF are working on your behalf to continue the positive community spirit and momentum
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Supporting one another. Supporting our community.