Why are e-patients with rare disorders online and willing to engage with pharma?
• Many patients feel isolated when they are diagnosed with a rare disorder. In most cases, no one has ever heard of their disease so they go online to make connections. • They are the primary drivers of their diagnosis and treatment because there are too few healthcare professionals that know what to do to help or are incented to invest time in their care. • They go online to find information to educate themselves and learn from others about how to adjust to living with a rare disorder and how to negotiate the therapeutic, financial, and insurance hurdles that they encounter daily. • They pay attention to pharma companies that develop their therapies. They are open to a relationship with them when they show that they care enough to throw out a lifeline. In this new world where patients have more and more control and responsibility for their own healthcare, the role of pharma to connect with these populations needs to change. Pharma has an opportunity to find new patients, facilitate th
