Welcome to RARING, the voice of the rare disease community and a no-BS forum for patients and their families, rare disease patient organizations, and medical professionals. If you live with a rare disease or love someone who does, RARING is the podcast for you, by you, and with you every day. Tune in to hear leading experts discussing next-generation diagnostics and treatments. Learn from passionate nonprofit leaders talking about their highs and lows fighting for their communities. And laugh and cry as real patients and caregivers like you share authentic and inspirational stories about their challenges and struggles to busy living. RARING: Because together, our voices are louder.
On the show today: Crisis Management OR how to pivot with as much style and grace as possible when all plans go out the window. Joining us is Debbie Drell, Director of Membership here at NORD and Mary McGowen, Executive Director of the Myositis Association, whose mission is to improve the lives of persons affected by myositis, fund innovative research, and increase myositis awareness and advocacy. How do leaders connect with their communities, partners, donors, and stakeholders when potentially scrambling to survive? Many small nonprofits are already doing what I call the “Doggie Paddle Therapy” just to keep the lights on every day. And yet there are incredibly positive outcomes that stem from uncertainty when you have the right circle of friends, a network of advisors, and a supportive coalition that’s got your back. Let’s learn how to lean into the pain, adapt on the fly, distill what is most critical and stay just as passionate and focused as we want and need to be — because tremendous opportunities lie inside unexpected challenges.
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