UpdatedSeptember 25, 2020 · 2 minute read
Learn more about the AllStripes Ambassador Program and how to get involved.
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.
If you or someone you know are interested in becoming one of our AllStripes ambassadors, reach out to our patient team at firstname.lastname@example.org to learn more.