There is no shortage of challenges that rare advocates face on a daily basis. Some impact your family and loved ones directly, and others may be related to your work as advocacy leaders. Regardless, these challenges have at some point impacted all of us. To help tackle some of these topics, and based on feedback from many of you, Global Genes has developed a new program, the Quick Guide Series — concise, accessible resources designed for patients, caregivers, and leaders to support their advocacy. Topics vary and will be released throughout the year, and our first two in the series are now available.
This guide helps individuals recognize and respond to medical gaslighting—when symptoms are dismissed or misinterpreted by healthcare providers. This guide outlines practical steps for self-advocacy, building a care team that listens, and documenting experiences to ensure your voice is heard.
Designed with emerging leaders and future-focused advocates in mind, this guide explores how to meaningfully participate in research and shape the future of rare disease advocacy. Learn how to engage with researchers, leverage data, and foster collaborative progress across generations.
To learn more about what additional topics will be released throughout the year, please join us here. We hope you find these valuable and look forward to hearing how you have leveraged this information to support your advocacy efforts.
This series is supported in part by:
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