The agenda is being carefully designed by our steering committee. The conference program will develop around the theme “Individually Rare, Collectively Common”.


The theme will be woven in through a variety of:

  • Engaging educational keynotes by scientists, clinicians and individuals with lived experiences.
  • Presentations on symptom management (in the areas of pain, mental health, etc.), clinical care (e.g., establishing realistic expectations for treatments), advocacy issues (e.g., timely access to important medicines), and updates on clinical trials.
  • Small group discussions and panel discussions where insights, experience and expertise will be shared.


If you have a suggestion for a topic, please email