New Maryland council to help guide legislature on rare diseases

Maryland becomes 26th state with such a council for rare disease advocacy

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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All hands in, signifying teamwork.

Legislators in Maryland have officially established a Rare Disease Advisory Council (RDAC) in the state.

The new council will bring together stakeholders from the community of people with rare diseases such as Lambert-Eaton myasthenic syndrome (LEMS), including patients, caregivers, scientists, and healthcare providers. The council will serve to educate the public, as well as be a resource to policymakers in Maryland to guide policy decisions to help people with rare disorders get the best possible support and care.

The creation of the Maryland RDAC, finalized with a signature from the state’s governor Wes Moore, was led by state senator Clarence Lam and delegate Emily Shetty.

“I’m grateful the Governor signed this important bill, which will help ensure a stronger and more coordinated support of resources for Marylanders living with rare diseases,” Lam said in a press release. “The new Council is a significant step forward to strategically bring together state resources to identify and address barriers that prevent individuals with rare diseases from accessing the care and resources they need to preserve and improve their health.”

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Shetty added: “Today marks an important milestone in Maryland’s efforts to support individuals and families affected by rare diseases. I was pleased to champion this law, which takes a collaborative approach to enhancing the quality of life for those with rare diseases and is dedicated to establishing a brighter future for this community.”

According to the National Organization for Rare Disorders (NORD), this makes Maryland the 26th state to establish an RDAC since 2015, when the first such advisory council was created in North Carolina.

“This RDAC will bring together important stakeholders across the rare disease community to advocate for meaningful policy change in Maryland,” said Heidi Ross, vice president of policy and regulatory affairs at NORD.

In 2020, NORD created Project RDAC, an effort to create more of these councils and strengthen the ones that already exist. The organization said Maryland’s RDAC marks a “critical threshold,” as RDACs now exist in more than half of the 50 U.S. states.

Although rare diseases like LEMS are individually uncommon, about 10% of people in Maryland live with one of the thousands of documented rare disorders.

“Thank you to Senator Clarence Lam and Delegate Emily Shetty for championing this legislation to help make a difference for the one in ten Marylanders currently living with a rare disease,” Ross said.