advocacy
Living with Myositis, An Awareness Month Discussion hosted by This is RARE.
ClubhouseThis is RARE. is hosting Jerry Williams, founder and president of MSU on Clubhouse for "Living with Myositis, An Awareness Month Discussion." Join us on Clubhouse May 14th at 7 PM ET to listen in, and to be a part of the discussion.
RARE. Talk with MSU: Self-Advocate or Hypochondriac
ClubhouseRARE. Talk with MSU: Self-Advocate or Hypochondriac, on Clubhouse, hosted by This is RARE. How does your doctor respond when you bring research, talk about your goals, talk about pain? Join us to talk about how we can work to improve our doctor-patient relationships.
Live with the Landman’s: Honoring the life of Stella Clapp
MSU Live YouTube MSU YouTube PageTo kick-off Spirit Week, join us LIVE on YouTube for an intimate discussion honoring the life of Stella Clapp with Stella's daughter, Jennifer Schubert.
The Power of Our Voice: FDA Listening Session for Adult Dermatomyositis
ZOOM Webinar 9125 N Old State Rd, Lincoln, DE, United StatesThe power of our voice can impact the direction of research and clinical trials. Join us for a virtual Fireside Chat on the lessons learned from our FDA Listening Session for Adult Dermatomyositis.
The Power of Our Voice: MSU Pain Study
MSU Zoom Video Session Video session using ZoomJoin for a retrospective look at how a community call to action led to a seminal study on pain in Myositis and what it means for the community, with Drs Salman Bhai and Abhiram Bhashyam, co-authors of Pain profile and opioid medication use in myositis.