In its 13th year, the nonprofit Dravet Syndrome UK (DSUK) — which seeks to improve the lives of those affected by the epilepsy disorder — has introduced its first strategic plan for supporting patients and their families through research, awareness, and education.
The five-year strategy outlines how the DSUK aims to address challenges faced by the roughly 15,000 U.K. residents who live with Dravet, a severe type of epilepsy characterized by prolonged seizures that start in the first year of life.
“Support for children and adults with Dravet syndrome has improved significantly during the past decade, but there is still much more work to do,” Galia Wilson, chair and trustee of DSUK, said in a press release.
“Families are still waiting too long for a diagnosis. We do not know enough about the comorbidities of Dravet syndrome and the spectrum nature of the condition. Transition into adult health care services remains challenging and many families struggle to access the statutory support they are entitled to,” Wilson said.
The 14-page DSUK strategic plan has four overarching objectives. One is to ensure that every Dravet family in the U.K. is aware of and has access to the organization and its patient-driven support. Another goal is for DSUK to lead the conversation about Dravet syndrome in the U.K. while optimizing the use of research funds, collaborating internationally, and developing an authoritative global voice.
The organization also will seek to increase understanding of the syndrome among health and social service professionals, with a goal of fostering earlier diagnoses and providing accessible routes to optimal patient care. Finally, DSUK aims to empower Dravet families by making sure they understand their rights, and have the ability to assert them to get needed care.
For each objective, the organization details how it will evaluate its progress. One measure of success will be whether, by 2026, no member of the DSUK community is left behind due to factors such as place of residence or ethnicity. Another measure will be whether at least 80% of DSUK families agree that new research projects have been developed with their needs in mind.
An additional goal is for at least 60% of families to report improved quality of life and clinical management of co-existing conditions. As for family empowerment, the organization hopes that, in five years, 80% of patients and their relatives will feel more knowledgeable about their rights.
“We want to reach more families, to deliver research that puts family needs first, to improve awareness and understanding amongst professionals, particularly in adult neurology and social services, and to give families the tools and support needed to assert their rights,” Wilson said.
“We have set ourselves an ambitious strategy because we believe this is the right time to move forward and, with a fantastic team on board, we have the right capability to do so,” Wilson added. “Most importantly, this is the right way for us to support everyone who lives with Dravet syndrome and all its challenges.”
The organization began in 2008 as a group of 30 Dravet families. Today, DSUK is working to help more than 500 families through support programming, education, and research funding.
The strategic plan, which marks a key milestone in the organization’s history, grew from changes initiated last year by DSUK’s new board. With its new team in place, the organization set out to shape its future development through the next five years and beyond.
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