In this first room, The Rare Journey Begins, we will talk about taking a journey together as we join This Is RARE. for a monthly Clubhouse room.

This journey of which we speak is open to everyone living with myositis. And, it’s open to anyone and everyone else who is living with a rare or chronic physical or mental health illness. If you are undiagnosed, this is open to you, too.

In “The Rare Journey Begins,” we will talk about our goals for this monthly room. We will explain why we think MSU is a different nonprofit, working from the heart and how that, together with building lasting relationships and always keeping our focus as a patient-centered organization has led us to this point. And we will discuss how we see this room moving forward. Don’t miss it!

A very special thank you – This is only possible thanks to the generosity of Kristine Hoestermann, owner of RARE., She has built and cultivated a support community of rare disease patients built on “come as you are.” From our individual experiences as patients joining her Clubhouse rooms, we have found them to be a loving and supportive extended family, and we have always felt safe and supported to be ourselves.

We are leaving our plans for this room flexible. We want this journey together to evolve as we learn more about you. Some of our plans do include inviting experts for discussions with the community, not just giving a presentation. We will also be inviting some very special guests to join us. This room will be all about authenticity and how we can learn from each other.

This event is only on Clubhouse, an audio-only social and networking app for your phone. Use the button below to join and listen in, and to be a part of the discussion if you choose!