Orphan Drugs Asia Live: Navigating the early stages of a community development

In Orphan Drug Congress, Orphan Drugs Live by rachel

Mr Alan Gilstrap, Director, Global Patient Advocacy Development – Rare Disease of Genzyme opened proceedings on day 2 of World Orphan Drug Asia 2014.  He gave a talk on forming and developing patient community in the US.

Genzyme has pioneered the development and delivery of transformative therapies for over 30 years. Founded in 1981 in Boston, Massachusetts, Genzyme evolved from a tiny start-up with just a handful of employees to one of the world’s leading biotech companies. Acquired by Sanofi in 2011, Genzyme now benefits from the reach and resources of one of the world’s largest pharmaceutical companies, with a shared commitment to improving the lives of patients.

In his keynote presentation, Alan touched on  Genzyme’s advocacy team. The patient community team was put together to keep patient group’s activities. It is a support outlet for these patients as well as international patient groups to interact with each other. He went on to share the roles that Genzyme has been part of in setting up early stages of patient groups community. This involves forming and developing groups.

Forming is the process of establishing rare disease patient identification, structure and strategic focus of the community, disease awareness/education. This can include identifying patients who will be willing to share their disease and the kinds of burdens they carry. Developing a patient group community on the other hand, is  defining and further enhancing the group’s strategic focus.