i married uncle and i'm the vice president of communications foreign word
a national organisation for real just workers
my article is a thirty year retrospective on or
he or from drug act and the emerging role of rare disease patient advocacy groups
here twenty thirteen with an important year in the rare disease community because mar thirtieth
anniversary of the establishment of ignored
to represent whole
where disease patients and patient advocacy groups
and also the thirtieth anniversary of the orphaned right
which was the law passed by the us congress in nineteen eighty three that created
financial incentives to encourage
pharmaceutical companies to develop treatments for people with rare diseases
the article takes a look at the really very interesting story of how patient litres
back in the late nineteen seventies and early eighties came together and realise that they
had shared interests even though they represented people with very different diseases
these patient advocates many of whom or patients or parents or spouses of patience
learned how to work with
government officials at n i h and f d a who were also concerned about
the problem in learned eventually how to do outreach to the us congress and the
cayman testifying before an important congressional subcommittee and ultimately they also learned how to work
with the media
in this case specifically jack like manner who was the star of a popular tv
show at that time called quincy
so it's just a really interesting story of how the orphan drug act came to
be
and the important role played by patient advocacy groups
and looking at how the groups have grown and develop and become more sophisticated about
research in the years since then and
taken on it really a very important role in trying to make meaningful contributions to
the development of treatments and in general to improving the lives of people with rare
disease