HDSA awards more than $2.1M in support to Centers of Excellence

Network of 57 sites and 11 regional partners across US to ensure quality care

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The Huntington’s Disease Society of America (HDSA) has awarded grants totaling more than $2.1 million to support its Centers of Excellence, which include multidisciplinary care teams with a track record of providing exemplary care for people with Huntington’s disease and their families.

A total of 57 institutions across the U.S. were awarded an HDSA grant, including the 56 centers that were part of last year’s network, and the newly recognized University of Connecticut Health Center.

With these 57 centers and 11 regional partner sites, the network now includes 68 facilities providing HDSA-recognized Huntington’s care across 37 U.S. states and Washington, D.C.

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“Increasing access to the best possible care is central to our mission to improve the lives of people with Huntington’s disease and their families,” Teresa Srajer, chair of HDSA’s national board of trustees, said in society press release.

An inherited neurodegenerative disease, Huntington’s carries a range of symptoms that include uncontrolled jerking movements, walking difficulties, speech and swallowing problems, and, in some cases, cognitive impairment.

While it currently lacks a disease-modifying therapy, available Huntington’s medications and nonpharmaceutical approaches can help in managing symptoms.

“The continued expansion of the HDSA Centers of Excellence network ensures that more HD [Huntington’s disease] families can find the high quality care and support they need as they navigate the many challenges of this devastating rare disease,” Srajer added.

The HDSA Centers of Excellence program was launched in 1998 with the goal of giving people affected by Huntington’s disease access to the best possible care.

Centers provide access to a range of specialists, from neurologists and genetic counselors to social workers and psychiatrists, who help patients and their families navigate the disease. These centers also are active participants in clinical research geared toward finding better ways of treating Huntington’s.

This HDSA program is open to all clinics based in the U.S. that have demonstrated the ability to give quality care and meet standards outlined by the society. The Centers of Excellence network has seen extensive growth over the last decade — since 2015, when there were 20 centers, frequent expansions have more than tripled that number.

“Families helping families is central to HDSA’s mission work,” said Louise Vetter, president and CEO of the HDSA. “All of the Huntington’s Disease Society of America’s programs are made possible by the dedication and generosity of the HD community who know that HDSA Centers of Excellence are the lynchpin in providing care and supporting the clinical research that brings us closer to a cure for this devastating rare disease.”