Global Genes is building a Rare Global Advocacy Leadership Council and we are looking for patient advocates from around the world to help us reach out to those affected by a rare disease to help us deliver our goals.

The council will be responsible for driving initiatives to bring patient support, advocacy training and advice on setting up a patient organization to all corners of the globe, to give those a voice who currently do not have one and to encourage development and support to all those who need it. We are looking for experienced advocates internationally with the time and expertise to offer this exciting project. Expectations are listed below. Funding will be provided to support travel.
  • Attend and participate in the RARE Global Advocacy Leadership Symposium and RARE Patient Advocacy Summit in San Diego, California, United States, from September 18 – 20, 2019.
  • Participate in three virtual meetings from October 2019 – August 2020.
  • Willingness to travel to events globally.

The application period has closed. Applicants will be notified by July 12, 2019.

If you have any questions, please email