Myositis Support Options
We host three closed Facebook support groups created to help myositis patients, caregivers and care partners, family members, and friends by providing support, education, and tips for self-advocacy. Our Facebook support groups began in 2010, and are the founding basis of our nonprofit.
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.
Education is essential for rare disease patients, and we empower patients and caregivers through education in various ways. We offer a detailed “Simply Put” series here, on our comprehensive myositis website. We host myositis experts who share their knowledge as a part of our video education sessions. We also provide education, awareness, and self-advocacy tips on our social media platforms.
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 Patient Financial Assistance Program
Due to the rarity of the disease, and the fact that many doctors may only see one patient, if any, with Myositis during their career, patients with Myositis often face difficulties in obtaining a diagnosis and adequate treatment. Furthermore, patients with chronic illnesses often face financial difficulties due to ongoing medical bills, lost wages, and extraneous expenses indirectly related to health care such as home modifications or expensive mobility equipment.
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.
We know Myositis patients need a voice, and a loud one, at every level of policy-making, with insurance companies, and with other medical decision-makers.
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.
Letter Writing Review
One of Emily Filmore’s goals, as a Co-Founding Director and Board Advisor, has been to find a way to provide a direct service to Myositis patients. As a published author, she has extensive experience with writing and editing and she has offered to provide a letter writing review service to patients.
Myositis Patient Get Well Card Program
We care and worry about our members, and when we are made aware that a myositis patient is facing a difficult time or is in the hospital, we send a get well card to help inspire them to keep fighting!
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
We offer a beta smartphone App for Myositis in partnership with Portable Genomics.
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 Program
We encourage patients diagnosed with the inflammatory myopathies (myositis) to participate in clinical trials. Patients with rare diseases are often difficult to find, and this can limit or even prevent research studies from moving forward. Participation in clinical trials helps to further advance research for myositis.
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
Many living with or caring for someone with myositis have had to give up regular work and often find creative ways to earn money through hobbies and other small business opportunities. This is for our registered patient and caregiver members and restrictions may apply. This is not the same as our commercial advertising program.