February 28th is recognized worldwide as Rare Disease Day. With nearly 7,000 known diseases worldwide–many without treatment–and over 300 million people worldwide living with rare diseases, Rare Disease Day is a globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people who live with a rare disease. Get to know the facts about rare diseases by visiting the National Organization for Rare Disorders (NORD) website.
MarylandRARE.org reports that there are “roughly three quarters of a million Marylanders living with a rare disease, half of whom are children.” Fortunately, there are resources to support Marylanders’ health and wellbeing, such as the Rare and Case Management (REM) Program, which provides community-based care coordination services for people with specialized health care needs, providing access to high quality, medically appropriate health care services in a cost-effective setting outside of a managed care organization.
This year’s Rare Disease Day theme is More Than You Can Imagine. We sat down with Celinda Carr, LCSW-C, CCM, The Coordinating Center’s REM Program Director, to learn more. Celinda has served on the Maryland’s Governor’s Rare Disease Advisory Council (RDAC) since 2025.
What qualifies a disease as “rare”?
“For a disease to be considered rare according to the FDA, “a disease or condition must affect less than 200,000 people in the United States.” There are over 300 diagnoses that qualify for the Rare and Expensive Case Management (REM) Program.
The REM Program is Maryland’s, case managed, fee for service alternative to HealthChoice Managed Care Organization (MCO) participation, which was established in 1997 by the Maryland Department of Health. What may be surprising to learn is that not all REM diagnoses are rare, however they are all expensive to treat. For many qualifying diagnoses, treatments can help, but often they are conditions that cannot be cured.”
How does the State of Maryland make recommendations on matters relating to people living with rare diseases?
“In 2023, the Maryland Rare Disease Advisory Council (MRDAC) was established by Maryland Legislature. I serve on the Council, and one way we learn about the needs of people affected by rare diseases in Maryland is through the Needs Assessment Survey.
All Maryland residents living with a rare disease can complete the survey. A caregiver, parent, spouse, legal guardian can also complete the survey. The answers will help improve the quality of life for people living with rare diseases in Maryland.”
Click here to start the Maryland Rare Disease Needs Assessment survey.
What services are provided through the REM Program?
“The Coordinating Center provides care coordination services for the REM Program. The main goal of the REM case manager is to help the client reach their highest level of functioning capability. This is done through care coordination, home visits and a variety of other case management services (e.g., assessment of client needs; client/caregiver education; caregiver support services; development of treatment plan; coordination of provider services; and follow-up of client’s progress).
In addition to care coordination, participating individuals are eligible to receive all Medicaid covered services, as well as optional services, which may require preauthorization. Basic services under the state plan include medically necessary: physician visits, inpatient hospital services, pharmacy, home health services, radiology and lab services, durable medical equipment, disposable medical supplies, therapies (physical/occupational/ speech/language) and assistive technology. Optional services may include medically necessary: private duty nursing and nursing assistance, nutritional supplements, and dental care.”
How does one qualify for the REM Program?
“To qualify for the REM Program applicants must be eligible for Maryland Medical Assistance (Medicaid) and must have a REM qualifying diagnosis, which are listed on the REM Intake Referral Form [PDF, 422.38 KB]. Individuals may not be eligible for the REM program if they already have Medicare.
The majority of people supported by our case managers (licensed social workers and registered nurses) have genetic disorders, neurological conditions, metabolic conditions, lung conditions, developmental disabilities, physical disabilities, and/or chronic diseases. Often, it is difficult for them to live independently without connection to the proper resources, consistent medical follow-up and community supports. The we see annually are Cerebral Palsy (Diplegic and Quadriplegic), Microcephaly, Quadriplegia, and Dependence on Renal Dialysis.”
How long can an individual receive REM services for?
“We provide care coordination for individuals as young as newborns through age 64. Each REM qualifying diagnosis has age out criteria associated with it. Some diagnoses allow a client to remain in the program until age 12 or younger, many until age 21, and still others until age 65. There is no cap on the number of participants who can be enrolled in the program. This past year, we served 4,542 clients (71% were under the age of 21), which is the highest number of participants in the history of the REM program!
We provide services for clients in all counties across the state of Maryland, but we see the highest concentrations of clients in Baltimore, Prince George’s, Montgomery, and Anne Arundel Counties, followed by Baltimore City.”
Can you be on a Medicaid Waiver while you are enrolled in the REM Program?
“Yes! An individual can be enrolled in the REM Program and a Medicaid Waiver—except Model Waiver.”
Visit our website to learn more about the Model Waiver program.
Can you enroll in the Model Waiver program while you are enrolled in the REM program?
“No. All clients in REM have been deemed eligible for Medicaid prior to enrollment. To be eligible for Model Waiver, a client cannot qualify for Medicaid by any other means.
We have REM participants who are on a variety of Medicaid Waivers (e.g., Autism Waiver, Home and Community-Based Options Waiver, DDA Waiver, Community Pathways). We recently added a quiz to our website that can help you navigate the best options for your care with The Center.”
Rare Disease Day plays a critical role in helping to raise awareness among policymakers and the public about rare diseases and their impact on people’s lives. Visit our website to take the ‘Explore Your Options’ quiz, to discover the best options for your care.
