Patients diagnosed with an ultra-rare disease that impacts only a handful of every one million people often have limited access to disease information and support services. The organizations that serve these patients are also looking for ways in which to be more effective and better address the needs of the community. We were asked to find a way to:
- Empower and equip patient groups to connect those suffering with rare diseases
- Improve understanding of the disease, its diagnosis and management
- Increase awareness of available resources and programs
Global Genes and SmithSolve, with support from industry, organized two-day regional patient meetings focused on strategies for living with a rare disorder. With input from leaders of patient groups, we customized program content and recruited expert speakers, including physicians and social workers.
Our work included:
- Attracted participants using a custom microsite and print materials
- Recruited expert speakers, including physicians, social workers and advocates
- Developed materials based on the interests and needs of patients and families
- Gained valuable insights from a participant survey
Rare Meetups provided patients and families with an opportunity to meet other people affected by their disease, in some cases for the very first time. They were able to share insights, learn from experts, and gain access to resources. The events strengthened and empowered this under-served patient community.
- 100% of attendees said the experience was very positive
- 64 participants, including newly diagnosed patients
- 275+ miles traveled, on average, by each attendee
- Majority of participants asked to learn more about company-sponsored programs