Category: Patient Leader Network
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World Rare Disease Day Patient Panel
In honor of World Rare Disease Day, the Patient Leader Network sat down with fellow rare disease patient leaders Jenica Leah, Meridith O’Connor, and Jessica Hanson to discuss the importance of resiliency, managing your own care, story sharing, and raising awareness to support the rare disease community. [su_youtube url="https://youtu.be/pNpssoeq9sc" width="800" height="560"] Key Takeaways We had…
Eight Steps to Elevate Your Advocacy
A new year brings fresh avenues for advocacy: new collaboration opportunities, new initiatives to launch, and even new organizations to build. We're humbled and honored to be a part of the patient journey, and we can't wait to see what the community accomplishes this year. Along the way, we'll be here to support your goals,…
Year in Review: Reflection & Goal Setting for Patient Leaders
The countdown to 2022 is on, but before we head into the new year, let's pause to reflect on our advocacy this past year. After all, the only way to improve is to take all your victories and battles as valuable learning lessons. In this patient leader workshop, we’ll hear from top patient leaders and…
Navigating the Holidays While Living with Chronic Illness
As the cold sets in, darkness falls, and the busy holiday season commences, many people feel vulnerable. Those of us living with chronic conditions may feel especially so. Grief for what and who have been lost arises, commercialization overwhelms, and our physical bodies need more care than ever. How can we navigate this season as…