Research has shown that people who receive support from a social network cope better, feel more in control, and have better outcomes than those who are isolated. Those who live with myositis, however, face the difficulty of dealing with a chronic illness plus the extra challenge of having a rare disease that most people have never heard of. Because the disease is so rare, it can be hard to find others who understand what you are going through and the challenges posed by myositis. TMA offers a variety of ways for you to connect with others who live with myositis. While we do not give each other medical advice, this shared experience can provide valuable insights to consider and discuss with your healthcare providers.
You are welcome to attend any scheduled myositis meeting, even if not in your geographical area. Just check our TMA events calendar and register for what interests you. TMA is an inclusive community and invites you to reach out and attend as many groups as you need. For those living outside the US, you are free to attend any meeting that works with your time zone. Please email us, and we can also help you find the nearest support group or other TMA members living nearby.
As a member of The Myositis Association, you are invited to join the TMA support group network. TMA offers members several patient and care partner support options. If not yet a member, join for free here.
Many of our meetings use breakout rooms. For instructions on accessing Zoom breakout rooms, review ACCESSING ZOOM BREAKOUT ROOMS.
TMA Worldwide: Patient & Care Partner Support by Diagnosis
Join TMA Worldwide Myositis Support Group: Peer Support to Help You Thrive
In honor of the international members who have consistently attended our TMA Nationwide myositis support group since its inception in 2022, we have updated the name to more realistically represent the population it serves. TMA Worldwide will continue the group’s commitment to monthly virtual myositis support by diagnosis. Co-led by up to five trained and certified support and/or affinity group leaders from various regions, we also provide a safe space for our TMA Care Partner Affinity Group to meet in their own breakout room!
Whether you’re navigating a new diagnosis or you’re farther along in journey and managing myositis well, this group provides a vital space to connect, share, and find encouragement. Your story matters—by joining, you can provide and receive hope and support to ease your life.
When?
First Saturday of every month at:
1:00 pm – 2:30 pm ET | 10:00 am – 11:30 am PT
Meetings feature breakout rooms by diagnosis, so you can connect with others who truly understand your specific condition, including:
- Antisynthetase Syndrome (ASyS)
- Dermatomyositis (DM)
- Inclusion Body Myositis (IBM)
- Juvenile Myositis (JM, JDM)
- Necrotizing Myopathy (NM, NAM, IMNM)
- Polymyositis (PM)
- Overlap Myositis
- TMA Care Partner Affinity Group (for family and friends)
To honor both the care partner and patient journey, and to provide the safest space to optimizing growth and healing, we ask that your loved one attend the breakout room for their diagnosis while you attend the breakout room for care partners. This would mean being on two different devices in separate rooms so you each have privacy. Both the patient journey and the care giver journey is difficult, and maintaining a healthy relationship while also facing myositis together is not easy. This is an opportunity for everyone to process their feelings safely without worrying about hurting the other person’s feelings. So we appreciate you honoring this safe space by attending the appropriate breakout room.
Breakout rooms available each month depend on who attends at the time of the meeting. We pre-assign breakout rooms based on your selection when you register. While we do not offer medical advice, this is the perfect place to discuss what has worked for you, hear from others in similar situations, and consider the options others are exploring. Most importantly, it’s a reminder that you are not alone. Join us and tap into the strength of a community that truly understands.
Regional Support Groups
Regional myositis support groups (formerly known as Keep in Touch (KIT) support groups) provide members the opportunity to get together with others in their area and share concerns, friendship, and ideas. When you choose this TMA service, your name, contact information, and diagnosis will be added to the list of support group members in your area and will only be shared with those in your specific KIT support group.
Volunteer leaders manage these local support groups, devoting their personal time and energy to organizing and encouraging communication among local TMA members. Group members interact with each other through virtual support group meetings, newsletters, telephone, and e-mails. Some groups have regularly scheduled meetings with speakers, meals, and local activities. A few groups meet face-to-face. For those living outside the US, please email us, and we will help you find the nearest support group or other TMA members living nearby.
Find Your Support GroupAffinity Groups
The term “affinity group” is used as a bringing together of people who share some commonality. TMA believes in creating safe spaces for communities that share more in common than their myositis diagnosis. Safe spaces can provide a break from judgment, unsolicited opinions, and having to explain yourself where there is no understanding. They allow people to feel supported and respected. This is especially important for people of color, members of the LGBTQIA+ community, and other marginalized groups.
Affinity groups play a vital role in ensuring an inclusive environment where all are valued, included, and empowered to succeed and are part of TMA’s commitment to amplifying patient voices and health equity and access. Our affinity groups also serve to help the organization create awareness and connectivity in communities where the groups have natural membership. The ability to effectively participate in this increased advocacy and awareness building is essential to TMA’s mission.
Increased awareness of myositis has the potential to lead to earlier diagnosis, more effective treatments, and improving the quality of life for those who live with myositis. TMA and our affinity groups also advocate for patients through educational and media events as well as advancing legislation that removes barriers to accessing the best myositis care.
We invite you to learn more about TMA’s affinity groups and how they are being successful in engaging our community of patients, care partners, family, friends, healthcare providers, and industry partners! See below for information for each group and check our events calendar here to find and register for an upcoming meeting or email TMA@myositis.org.
1×1 Peer Support
If you have attended our support and/or affinity groups and still need help navigating a challenge, TMA offers one-on-one peer support. This allows individuals to discuss specific issues or challenges they’re facing and receive guidance from someone who has been through similar situations. Although at TMA we do not give each other medical advice, this shared experience can provide valuable insights to consider and discuss with your healthcare providers.
Becoming a TMA Support or Affinity Group Leader
If would like to become a Support or Affinity Group Leader, TMA provides training, certification and resources that can help. To volunteer for this role, please fill out our volunteer survey.
Meditation Mondays – A Space for Mindfulness & Healing
When: Every Monday (except holidays), 9-9:30am ET | 8-8:30am CT | 7-7:30am MT | 6-6:30am PT
Who’s it for: People living with myositis and their care partners
What we’ll do: We’ll come together for a guided meditation session that includes brief exercises, followed by reflections. These exercises will be led either by a special guest, a member of the group, or through a pre-recorded exercise. Each week, we’ll explore different types of guided mindfulness exercises, and people of all levels of experience are welcome. Whether you’re just starting your mindfulness journey or have been practicing for years, you’re welcome here.
To join us, please fill out the interest form to receive the link for the session.