I have been struck by the phrase “community” over the past few weeks. We use this word to describe the families, adults, children, caregivers, friends, researchers, healthcare providers and others affected by Niemann-Pick disease. The word itself implies a unique togetherness. It is a group drawn together by the need for a cure, commonalities and shared challenges.
I’ve joined this community to help fulfill the vision and mission of NNPDF. One of the priorities identified and clearly needed is a family services and support program. To meet this need NNPDF is launching a Family Services Pilot Program, led by a Family Services Manager, to further evaluate the supports that our community seeks and to continue to support and empower patients and families affected by Niemann-Pick disease by meeting them where they are at in their journey.
Check this blog for regular updates on the NNPDF and the issues that impact our community.
Joslyn Crowe, MSW, MA