Later this week, Jeanne Barnett will be attending the fifth annual RARE Patient Advocacy Summit run by Global Genes in Huntington Beach, California.

The goal of this year’s RARE Patient Advocacy Summit is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been recently diagnosed, are building a disease community, thinking about funding early research, actively engaged in developing a treatment, or have been advocating in rare disease for decades.

Jeanne received a scholarship to attend this year’s conference. She has lined up interesting meetings and will report back to all at

Global Genes is a patient advocacy organization that started in 2009. Watch this video to learn more:


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