What makes a great rare disease community? Regardless of how you define community, there’s one common thread: people. The Dravet syndrome community is made up of patient families, as well as clinicians, researchers, industry partners, and other supporters. We recognize that if you consider yourself a part of our great community, then you are involved or might even want to get more involved.
Community organizations form when people see a need and are ready to be organized. DSF came about when a small group of parents recognized that there was a desperate need for research for Dravet syndrome, but as a rare disease, those efforts would need to be driven by our patient community. From there we have grown to meet other needs in our community. DSF exists to promote interest in Dravet syndrome and our momentum in the last ten years has been because a significant number of people care about this issue and feel that their actions can make a difference.
Needs can be defined as the gap between what is and what should be. While we have worked hard to meet many of these needs over the years, we know there are still unmet needs – and this is where we need your help! We want to know what you want to hear from you on what needs you have to help us in planning new initiatives and programs that will bring the most value to our entire community. We can’t do this by ourselves. Please take the time to think about what would be useful for you that DSF does not already offer.
Some things to consider:
- Is there a new tool or resource that would be helpful?
- Is there a topic you would like to learn more about?
- Is there a better way we could be communicating information about the latest in Dravet syndrome and events in our community?
Community action is a web of relationships that is enhanced when each of us shares our voice and joins in common purpose. We are interconnected and we want to hear from you. We encourage you to reach out to us with your ideas at [email protected].