What is Patient Ambassador Program?

Patient Ambassadors are strong patient advocates who can represent the patient voice at NextGen 22 conference. They will participate in discussions, share patient perspectives about clinical trials and research studies. We also hope they remain involved in patient advocacy beyond the conference and share their learnings in helping other patients.

Applying to be a patient ambassador (Application is FREE)

You can fill out this form to apply to be a Patient Ambassador at the NextGen conference. If you are chosen, you will receive an email within a week. Please fill out the form before January 31st, 2022.

APPLY HERE!

FAQ about Patient Ambassador Program

1) How will patient ambassadors be chosen?

We plan to choose patients ambassadors who:

• are experienced with refractory SJIA & MAS.
• are from US, Europe and Canada (we hope to expand to other parts of the world in future conferences)
• who represent different disease phenotypes (e.g., systemic disease, chronic arthritis or lung disease)
• who represent the different hospitals and centers that Accelerate research study is targeting
• include both parents of pediatric patients and a few adult patients

2) How can I help as a Patient Ambassador in the Conference?

The SJIA & Still’s Patient Ambassador  can share his/her story (the experience with the disease & treatments), and give feedback to plans for new research studies and clinical trials. This feedback should take into consideration the larger SJIA and Still’s community; not just his/her individual needs. As a Patient Ambassador you will bring your advocacy expertise/experience and knowledge about managing a chronic disease on a daily basis.

If you want to get in touch with us, email at contact@systemicjia.org

• Unmet Needs in SJIA, Still’s and MAS
• Barriers to and opportunities for successful clinical trials
• Opportunity for Natural History Studies as a comparator arm for clinical trials
• Learning from other patient foundations: Investigator-initiated trials, Nof1 trials, etc.
• Diagnostic criteria for SJIA & Adult Onset Still’s Disease
• Therapies for refractory disease: Focus on Hematopoietic Stem Cell Transplantation for refractory SJIA, especially SJIA-LD

Working Sessions: In an effort to go beyond discussion, the conference includes several working sessions focused on research studies or clinical trials.

REGISTRATION

Registration is FREE for everyone.

Register here

CONTACT

If you want to get in touch about conference program, email us at contact@systemicjia.org

General registration enquiries can be submitted to the conference secretariat at systemicjia@mci-group.com