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Rare Medical Journeys in Myositis

Community Tips

Please use this form to submit your tips for navigating a rare medical journey in myositis. Share what you and your family do to overcome isolation, connect with others, and make your rare experience easier.

Coping strategies? Fun ways to make an infusion day more whimsical? Favorite stress reliever? Encouraging words? TMA wants to hear it all! We will publish a collection of advice after Rare Disease Day. We will not share any personal information in this resource.

Questions? Email tma@myositis.org.

Thank you for sharing!
1.Please share the tip that has helped you the most in navigating your rare medical journey in myositis.(Required.)
2.What advice or other tips would you like to share about living well with your form of myositis?
3.What advice do you have for myositis care partners?
4.What advice do you have for myositis clinicians or researchers?
5.What is the make and model of any equipment that has really worked well for you?
6.Would you like to share words of encouragement and inspiration?