Apr 10, 2023 | Rare Diseases

By Stacy Alcide, RN, Certified Aging Life Care Manager

As care managers, we can quickly and professionally assess situations and guide families to the best decisions for them and their loved ones. Everyone and every situation are different. However, a care manager can assist in a situation involving a rare disease. 

Definition and Prevalence of Rare Disease 

According to the National Organization for Rare Disorders (NORD), “a rare disorder is a disease or condition that affects fewer than 200,000 Americans”. A full list of the over 700,00 rare diseases can be found at https://rarediseases.org.

According to MaryandRARE.org, “roughly three-quarters of a million Marylanders live with a rare disease, half of whom are children.” MarylandRARE is a coalition whose mission is to:

  • Increase rare disease awareness
  • Influence public health policy outcomes
  • Impact healthcare deliverables and research discovery

The Team Approach

The importance of enlisting a team to support and advocate for someone with a rare disease is invaluable.

As we assess clients in these situations, we initially see the care team as multiple physicians and close family and friends. A lot of help is wonderful; however, it may come with some challenges. This is where hiring a care manager can provide a great deal of assistance.

For example, one obstacle we see is communication, especially surrounding medical care. With so many specialists – oftentimes working in a silo – no one physician may oversee the case and be fully aware of the entire medical picture. 

Another example we come across concerns the amount of work the clients loved one(s) are juggling. They are involved with advocating and organizing all the details of care (e.g., daily caregiving, transportation to and from as well as attending medical appointments, handling multiple prescriptions and refills, etc.), which is a lot of information to coordinate. Their love and care are important. The concern is for their well-being, too. Caring for a person with a rare disease can morph into a full-time situation, a stressful situation that could lead to caregiver burnout. 

The Top Five Rare Disease Diagnoses in Maryland

According to The Coordinating Center of Maryland, the top five diagnoses seen annually are: 

  • Cerebral Palsy (Diplegic and Quadriplegic)
  • Microcephaly
  • Quadriplegia
  • Hydrocephalus
  • Cleft Palate and Spina Bifida (which are tied)

What are the Resources in Maryland for Rare Diseases?

The Rare and Case Management (REM) Program provides community-based care coordination services for people with specialized healthcare needs. “To qualify for the REM Program applicants must be eligible for Maryland Medical Assistance (Medicaid) and must have a REM qualifying diagnosis, which is listed on the REM Intake Referral Form. Individuals may not be eligible for the REM program if they already have Medicare.”

The Option Group’s Certified Care Managers help families navigate the complex and confusing healthcare maze to ensure the highest level of safety, independence, and comfort for their loved ones.

If you or someone you care about needs additional support to help cope, The Option Group is here to help. Please contact our professional care management team for assistance.

About The Option Group: Founded in 2010, The Option Group’s compassionate team of experienced Certified Life Care Managers serves families, their loved ones, medical professionals, and professional family advisors in Maryland, Pennsylvania, and Delaware. The firm understands the challenges of caring for an individual who needs assistance due to aging, dementia, disability, or serious illness. Their skilled providers possess over 100 years of combined experience navigating the healthcare maze and accessing hundreds of quality resources. The Option Group helps families spend quality time with their loved ones, providing clear choices that lead to better care. For more information, visit www.theoptiongroup.net or call 410-667-0266 (MD) or 717-287-9900 / 610-885-8899/ 215-896-6756 (PA) / or 302-858-6449 (DE).