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Planning for the future

2018-2022 DSF Strategic Plan

Much has changed in the field of Dravet syndrome since the inception of DSF in 2009. The purpose of this 5-year strategic plan is to articulate the long‐range direction and priorities for DSF. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding current community priorities, emerging needs, and organizational strengths and vulnerabilities.

The objectives and strategies described in this plan have been reviewed and approved by our board of directors, scientific advisory board, and medical advisory board. These strategies will guide DSF’s efforts and investments over the next five years, and will balance our current and future needs.

A summary of our initial 5-year strategic plan will be made available at the end of 2022. A new 5-year strategic plan will be developed and shared in 2023.

DSF Strategic Objectives


Research & Professional Education

Through collaboration, communication, and financial support with our research community, we can improve the timeline for better treatments and a cure. By supporting opportunities that allow for greater education on Dravet syndrome throughout the healthcare system, we can increase diagnosis and assure the best quality of care.


Increase Revenue

Funding growth is challenging, particularly for a rare disease nonprofit. By increasing and diversifying our revenue streams we can ensure we have a sustainable operating model that meets the demands of our continuously growing community, and guarantee our success and longevity.


Family Education & Advocacy

We will continue to support patients and families with disease education and advocacy needs through maintenance and expansion of patient resources, as well as family-to-family support.


Community Development & Education

By increasing the leadership roles of our staff, board, volunteers, and donors, we can build on current strengths through internal capabilities and resources, while expanding our community connections. We recognize the importance of an ongoing assessment of our role within the community and the most effective use of our resources, as well as the need to continually communicate our priorities, goals, strategies, and accomplishments to inform and engage our stakeholders.

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