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October 2018 Newsletter: ASMD Update

October 2018

ASMD Update

Over the past months, the NNPDF has identified the need for ongoing communication and updates from our industry partner Sanofi Genzyme. The Sanofi Genzyme team has heard this request and is working hard to deliver consistent updates to the ASMD community, highlighting the value of community-industry information exchange.

Recent steps towards this include:

  • ASMD community member, Jeff Bebout, spoke at Sanofi Genzyme during October Awareness Month. Jeff shared his personal experience living with ASMD, his path to diagnosis, his health challenges, and his hopes for the future with Sanofi staff at the Cambridge, MA headquarters.
  • The community requested an FAQ from Sanofi during their session together at this year’s NNPDF Family Conference. The purpose of this document is to address several important questions that the ASMD community has within global guidelines that the company has set. Sanofi is currently working on responding to our FAQ and is eager for its presentation to the community.
  • Sanofi is working with the International Niemann-Pick Disease Alliance (INPDA), which NNPDF is a member of, to create a 1-page informational document on ASMD for healthcare providers as well as a patient version.
  • Several community surveys are soon to be underway related to ASMD. These include a Treatment Preference Study and a Caregiver Burden Study. More detailed information regarding these research studies to follow.
  • Additional information related to Niemann-Pick Disease Types A/B (ASMD) patient and trial information is available on our website.