Advocacy groups are vocal and powerful, and you don’t want them working against you. But they don’t necessarily have the same perspectives or agendas as less connected patients.
The industry began looking tentatively at patients as customers two decades ago but it is only since the Web created virtual disease communities that we’ve been able to find and talk with patients who have obscure diseases. This is occurring just as the industry is, ironically, being forced to look for new commercial opportunities in diseases that were once regarded as not profitable enough to target in the old industry block-buster model.
The list of patient advocacy groups is long and growing now that the Web has enabled patients with exceedingly rare diseases -- for example, alpha-1 antitrypsin deficiency or rasopathies -- to assemble and find their collective voice. Current estimates place the number of “rare” diseases at about 6,000 (JAMA, June 8, 2011).
