In our first room, The Rare Journey Begins, we talked about taking a journey together as we join This Is RARE. for a bi-monthly Clubhouse room.

Our second room, Self-Advocate or Hypochondriac is an extension of a conversation about communicating with our doctors as rare and chronic illness patients and caregivers.

How does your doctor respond to you questioning something? How about when you bring medical research? Or, you talk about your pain? Does your doctor see you as advocating for yourself or as a hypochondriac? Join us to discuss this topic and to share your experiences, tips, and other ways that we can we do better to make the doctor/patient relationship stronger.

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 still leaving our plans for this room very flexible because we want this journey to happen organically together with you. Some of the things we will do include inviting experts for discussions with the community. We will also be inviting some very special guests to join us. This room is 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!