Unpacking the Gift of Life
Unpacking the Gift of Life is a place to explore the rare kidney disease and transplant journey with hope and honesty. With your host Valen Keefer, we’re here to connect, uplift, and empower those living with rare disease.
Unpacking the Gift of Life
Action in Advocacy: The Patient’s Guide to Finding Your Voice
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Advocacy starts with finding your voice. Valen and chronic rare disease patient advocate Swapna Kakani discuss how they discovered their purpose in patient advocacy and offer practical tips for anyone wanting to make a difference. Learn how to use your voice to drive change and support the rare disease community.
About Your Host
Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com
Additional Resources
- Swapna Kakani (@swapnaspeaks), https://www.instagram.com/swapnaspeaks
- The Gutsy Perspective – Short Bowel Syndrome Quality of Life Research, https://www.thegutsyperspective.org/
- Alabama Rare – Alabama rare disease policy advocacy network, www.alabamarare.org
- State Zebra Network – rare disease state policy advocacy network, www.zebranetwork.org
- Intestinal Rehab & Transplant Unwrapped – organization for supporting patients with intestinal failure, rehabilitation, and transplantation, www.transplantunwrapped.org