We started the AllStripes ambassador program to help raise awareness in the rare disease community and beyond. Our goal is to empower patients, parents, and caregivers to share their experiences, so that others can get diagnosed sooner and more people are educated about their rare conditions. Through various interviews with patients, parents, and caregivers, we learned and recognized that the rare disease community wants to do more to drive research for their rare disease. They also want to share their expertise, so that other families don’t have to go through the same challenges and have better diagnostic journeys and treatment options. This is a unique opportunity for individuals and families to get involved with patient advocacy.

To date, we have ambassadors from the U.S., Canada, Australia, and Germany. We asked one of our ambassadors, Leah, why she agreed to become an AllStripes ambassador.

“I joined AllStripes to spread hope and support for Myasthenia Gravis patients and to escalate awareness in research for new therapies,” says Leah.

The AllStripes ambassador program began in January 2019. It started in six conditions with less than ten ambassadors. Now, there are over forty ambassadors across sixteen conditions. Some of our more recent programs include: CDKL5, GM1 gangliosidosis, Niemann-Pick Type C (NPC), Progressive Supranuclear Palsy (PSP), and Wilson disease. Becoming an AllStripes ambassador is optional.

What does being an AllStripes ambassador entail?

• AllStripes ambassadors can share AllStripes as a resource to their rare disease communities. They often share through social media, support groups, or individual outreach.
• AllStripes ambassadors can share their rare disease experience and be featured on our blog.
• Ambassadors can also opt in to be featured on their condition’s landing page. For example, Kimberly chose to share a photo of her son, Charlie, and why she joined AllStripes. You can check out the SLC6A1 page to see Charlie’s photo and Kimberly’s quote.
• Ambassadors can get a sneak peek on upcoming news and features from the AllStripes team before they’re released to the general AllStripes community.
• Ambassadors have an opportunity to enjoy fun perks like swag and receive exclusive opportunities to help improve AllStripes’ product and user experience.

If you or someone you know are interested in becoming one of our AllStripes ambassadors, reach out to our patient team at community@allstripes.com to learn more.