RARE Cast by Global Genes: “A Young Rare Disease Advocate Discusses Life with an Undiagnosed Condition”
April 29 is Undiagnosed Rare Disease Day. It is a day when advocates raise awareness among the general public and policy makers about the emotional, physical, and financial impact living with an undiagnosed rare disease has on patients and their families. Ahead of this year’s Undiagnosed Rare Disease Day we spoke with Ava Szajnuk, an 11-year-old undiagnosed rare disease patient and advocate, about how her condition impacts her daily life, and the work she’s done as an advocate.
RARECast: A Young Rare Disease Advocate Discusses Life with an Undiagnosed Condition
Learn More about RARE Cast by Global Genes
ABOUT
Global Genes
The organization’s mission is to eliminate the challenges of rare and genetic diseases. It works towards this through raising awareness, providing public and physician education, building community support through social media, and funding research to find treatments and cures.