Living with or having a loved one with a rare disease is
easier with support. The National Organization for Rare Disorders
(NORD) hosts patient listening sessions with the FDA’s Patient
Affairs Staff that offer patient communities opportunities to share
experiences about their disease or condition.2
Participating in patient forums or working with nonprofits to help
elevate awareness around a condition provides community and may
create a sense of connection to others.
For example, a group of parents whose children lived with
Growth Hormone Deficiency, a rare condition, turned their grassroots
support group into a nationally recognized non-profit, called the MAGIC
FOUNDATION4 that provides support services for families
of children afflicted with growth disorders. In June 2014, the U.S.
Congress passed a bill nationally recognizing Children’s Growth
Awareness Week4 to draw attention to the challenges faced
by children with these conditions. Novo Nordisk is a proud sponsor and
partner of the Magic Foundation and we are committed to advancing
solutions for this patient community.