Supporting Patients With Rare Diseases

This February 28th, we recognize National Rare Disease Day. Millions of patients across the nation are currently living with a rare disease, and while rare diseases may impact fewer people, it doesn’t make these patients less critical or worthy of our advocacy.

As a leader of a patient advocacy team, I have the incredible opportunity to not only work with my own patients, but hear the stories of my advocates’ patients as well. In recent months, an advocate on my team, Dee Dee, shared an experience she had when her patient was diagnosed with a rare disease.

This patient was diagnosed with myelodysplastic syndrome (MDS). MDS is a disorder of the bone marrow, where the bone marrow does not produce enough healthy blood cells. The reduced blood cell and platelet count hinders the body’s ability to fight infection and control bleeding. This patient in particular was receiving regular blood transfusions, but quickly became unable to afford his medications and treatments. Dee Dee met with him, listened to his concerns and gave him the assurance he needed to continue treatment while she found solutions to his financial burdens.

By using the Atlas platform, Dee Dee was able to find a foundation that would cover out of pocket expenses for his treatment. The patient shared that the grant from the foundation allowed him to enjoy his time with his family without financial worry.

Foundations such as the National Organization for Rare Disorders (NORD) offer grants periodically for eligible patients to cover some of the out of pocket expenses associated with their treatment. Atlas matches eligible patients with and enrolls them in these programs, and thousands of other open funds, to ensure that patients in need are able to receive assistance quickly. Atlas also staffs expert advocates, like Dee Dee, at client health systems to ensure patients get the technology and onsite personal support they need.

“Atlas matches eligible patients with and enrolls them in these programs, and thousands of other open funds, to ensure that patients in need are able to receive assistance quickly.”

– Shannon Lewis, Manager of Patient Advocacy

Thank you to Dee Dee and her patient for sharing their story. For more information on rare diseases, please visit the Genetic and Rare Diseases Information Center through the U.S Department of Health & Human Services website.