Issue 8 | February 2022

Rare disease is anything but rare. As many as 7,000 rare diseases affect 400 million people globally. February is Rare Disease Month. In today’s newsletter, we’re amplifying the stories of people affected by rare diseases and how they’re using their experiences to bring hope to others. Don’t forget to forward this email to your loved ones. The more awareness we raise, the more we can improve patient diagnosis and care.

When the Work Is Personal: How This CZIer Builds Resources for the Rare Disease Community
 

Discover how Andra Stratton uses her personal and professional experiences to support the patient-led organizations improving the lives of people affected by rare diseases.

Uncovering Sarcoidosis: The Rare Disease Impacting Black Women in the U.S.

Sarcoidosis is an inflammatory disease disproportionately impacting Black women in the U.S. But the patient advocacy community is coming together to improve diagnosis and treatment.

2 Rare As One Grantees on Why They Founded Patient-Driven Research Organizations

Two rare disease advocates share their stories of navigating rare disease diagnoses and the feelings of fear, uncertainty and loneliness that can often come along with them.

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