Myositis Patient Financial Assistance

Living with a rare chronic illness causes many financial difficulties

About the Program

Our Myositis Patient Financial Assistance Program was released on our one-year anniversary of becoming a  501(c)(3) non-profit organization founded by myositis patients, for myositis patients. Myositis, a rare and debilitating neuromuscular disease, affects an estimated 50,000-75,000 people in the United States. This program adds to the ever-growing list of services we offer to patients to provide day-to-day support to help patients cope with Myositis.

Due to the rarity of the disease, and the fact that many doctors may only see one patient, if any, with Myositis in their careers, patients with Myositis and suspected of having Myositis often face difficulties in procuring an expedient 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 and medical travel. Therefore, we have worked tirelessly to raise funds to establish our Financial Assistance Program. Through it, we will provide funds to patients for travel to see known myositis experts for diagnosis and treatment, help with medical expenses, and household expenses due to the overwhelming costs of living with a chronic illness.

MSU hopes, 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 year, based on a number of factors defined below, on the application, and in our new help guide.

Program Details

To apply for financial assistance the patient must be diagnosed with a form of inflammatory myopathy (myositis) or be going through a diagnostic process in which doctors strongly suspect and are testing the patient for one of the forms of myositis through muscle or skin biopsy, EMG, and/or blood work.

This program is open to patients in the United States of America. Requests for assistance are evaluated on a case-by-case basis and are subject to funding availability as well as eligibility and financial need. Patients may be eligible to receive up to a maximum of $1,000 per year from MSU. All supporting documents must be included to be considered for an award. If you qualify for a financial award, the amount awarded will be paid directly to your creditor(s), with the exception of case-by-case situations.

All bills will be paid directly to the creditor

Paperwork required includes the application including the last page which needs to be completed by a doctor, copies of bills or expenses you wish us to pay, and powers of attorney (if applicable) if applying on someone else’s behalf.

Medical Travel is defined as airfare; mileage; hotel; ground transportation such as taxi, Uber, Lyft, public transportation services, bus fare; and/or train fare; for travel more than 100 miles away from home to consult with a Myositis Specialist for diagnosis, treatment, and testing. Medical travel assistance requires pre-approval using the Financial Assistance application and other required documentation as outlined in this help guide. If approved, each medical travel decision, and what is included in the approval amount, is made on a case-by-case basis, not to exceed $1,000. (You may be asked to pay upfront for flights, bus and train travel and, if approved, these will be reimbursed.) See the help guide for full details on Medical Travel procedures. Please submit your application within 60 days of your appointment.

Medical Bills are defined as bills payable for medical diagnosis, treatment, and care to pharmacies (or formularies) for prescriptions, accredited hospitals, labs, Licensed Medical Doctors, Doctors of Osteopathy, urgent care centers, and other like institutions. These are not reimbursable expenses. We will pay directly to your creditors according to a recent bill you provide to us.

Household/Living Expenses are defined on a case-by-case situation but may include utility bills, mortgage or rent payments, etc. May also include toilet lifts, wheelchairs, power chairs, lift seats and necessary accessories. Must have a physicians note that these items are necessary.

Application Steps

Below are the steps to start the process of requesting financial assistance. This is only a brief overview. All details are included in the Application and Help Guide.

  • Be sure you are a registered member of our organization, MSU. You can register for your free membership at
  • Review the qualifications and eligibility information above.
  • If you meet the criteria, download and complete the Financial Assistance Application. The downloads are below. Be sure to download the Help Guide as well. You will need this for additional information.
  • Gather all supporting documents that are required including the latest copies of bills and statements you are asking us to pay ensuring your insurance company has already paid their part for medical bills.
  • All bills submitted must include a telephone number, mailing address, and account number.
  • If requesting rent assistance, we require a copy of your lease and a signed/dated letter from your landlord that includes the payment mailing address, phone number, who we make the check payable to, and the amount owed.

Sending your application and documents:

Only completed, signed applications are accepted. Do not include any health records as we do not need these.


Fax your completed application and supporting documents to 888-MYO-RARE ( 888-696-7273)


Email your completed application and supporting documents to (Add this email address to your contacts to avoid our replies from going to your spam/junk folders. If you have not heard back from us within two weeks, be sure to check those folders).


Mail your completed application and supporting documents to the address below:

9125 N. Old State Road
Lincoln, DE 19960

Download the Application and Help Guide

NOTE: Applicants and potential recipients of financial assistance should discuss any ramifications with their caseworker, accountant, or lawyer.

Anti-Discrimination Policy: MSU does not discriminate based on race, color, age, religion, national origin, gender, gender expression, sexual orientation, national origin (ancestry), marital status, disability, or political affiliation. All financial applications will be reviewed on a case-by-case basis and the final determination will be based on eligibility, financial need, and availability of funds.

© 2019 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy

MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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