Myositis Support Options
We also host monthly video support sessions where patients can meet others, face-to-face, and discuss life with myositis, share experiences and tips for adapting to this chronic autoimmune disease.
Another important aspect of education for myositis patients is learning directly through the experiences of others. Utilizing these experiences and research provided by other patients, you may learn in a more relatable manner. We provide patient-led education in our online support groups and in patient-led video education sessions.
We are dedicated to helping myositis patients and caregivers learn as much as possible to effectively advocate and take control of their health.
Myositis Financial Assistance Program
Therefore, we have worked tirelessly to raise funds to establish this Financial Assistance Program. Through it, we will provide funds to patients for medical travel to see known myositis experts for diagnosis and treatment, to help with medical-related expenses, and for household expenses due to the overwhelming costs of living with a chronic illness.
We hope, through these funds, to provide much needed financial relief to patients, whose lives are already stressed due to illness, allowing them to more fully concentrate on their health. Patients who qualify will be eligible for a maximum of $1000 per rolling year.
Myositis Advocacy and Self-Advocacy Programs
As a rare disease, Myositis can often be overlooked and misunderstood. We will help to be your voice of change. Contact us with any pressing issues you think we need to tackle in the short-term.
Myositis Letter Writing Review
Myositis Get Well Card Program
If you know a patient who would benefit from a card, please contact us with the name, mailing address (whether it is a home address or hospital), and any other details that would help us tailor the card to them. We have found this seemingly small gesture truly brings joy to the patient.
Myositis Smartphone App
The App allows patients and caregivers to track various health data and the ability to share that data with the healthcare team. This is just the start. More features will be available with a goal towards precision medicine.
Clinical Trial Matching
In partnership with Antidote Technologies, we provide a clinical trial matching program.
Use the clinical trial matching technology to search for trials based on your diagnosis and how far you are willing to travel. Answer questions based on the inclusion and exclusion criteria to help you locate clinical trials for which you are more likely to qualify. Trial results are provided in an easy-to-read-and-understand format and enrollment information is also provided.
All trials listed on the clinicaltrials.gov website are included in the clinical trial matching program.
Member Advertising Program
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register