fbpx
Loading Events

« All Events

  • This event has passed.

RARE. Talk with MSU: The Rare Journey Begins

June 7 @ 7:00 pm - 8:30 pm EDT

Free
RARE. Talk with MSU hosted by This Is RARE.

RARE. Talk with MSU: The Rare Journey Begins

Only on Clubhouse

Hosted by This Is Rare.

Monday, June 7, 2021, at 7:00 PM Eastern Time

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!

Myositis is RARE

Shop RARE.

Shop the store that started it all, RARE.

Thanks to the owner of RARE., Kristine Hoestermann, for creating a Myositis Zebra design now available for print, t-shirt, sweatshirt, and Raglan. Choose MSU as your nonprofit and RARE. donates a portion of your sale to us, a part of their Giving Program.

Shop Myositis, and all RARE. apparel and items at https://findyourrare.com/collections/may-awareness-collection

About Clubhouse

Clubhouse is an audio-only, drop-in app for networking, information, and even support. It is now available on both iOS and Android. To join the event, use the link provided to bypass the waiting area.

MSU Facebook page

Be sure to visit and “Like” our public Facebook page for special events, articles, videos, and patient and caregiver opportunities.Visit us on Facebook »

Upcoming support and education sessions

Event starts in . . .

2021/06/07 19:00:00

Tags:

Details

Date:
June 7
Time:
7:00 pm - 8:30 pm EDT
Cost:
Free
Event Category:
Event Tags:
, , , , ,
Website:
https://www.clubhouse.com/join/thisisrare/HKPhUcy6/M14Ae3np

Venue

Clubhouse

Organizer

Myositis Support and Understanding (MSU)
Email:
info@UnderstandingMyositis.org
Website:
https://UnderstandingMyositis.org

Other

Event Audience
All Myositis Patients
Tags:

© 2021 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

Log in with your credentials

or    

Forgot your details?

Create Account

Send this to a friend