We are so proud of our community’s accomplishments in 2021 and we can’t wait to see what we are able to do in 2022. Even while we are facing the omicron variant and an increase in COVID cases at the time of this writing, our team is optimistic and hopeful that better days lie ahead later this year. Here are the top 3 things we are looking forward to in 2022:
- Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting on Dravet Syndrome
EL-PFDD meetings bring together patients and caregivers, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. DSF will be hosting a virtual EL-PFDD on Dravet syndrome on February 3, 2022 from 10am-3pm EST. The goal of the meeting is to hear from patient caregivers about what it is like to live with Dravet syndrome and the impact on the patient and family, so that the FDA and pharmaceutical companies can understand the patient experience. This information can help the FDA make informed decisions on approvals of potential medicines for Dravet syndrome, and the information collected helps pharmaceutical companies to design clinical trials that are meaningful for patients. Since it will be a virtual event, you will have the opportunity to share your experiences from wherever you are.
After the meeting, we will produce a Voice of the Patient report which is a detailed summary of the patient testimony presented at the meeting. This report will serve a critical function in communicating to both FDA review staff and industry the improvements that patients want and hope to see in their daily lives. You can learn more about EL-PFDD meetings and why your participation in this particular meeting is so important here, and then be sure to register for the meeting.
- DSF Biennial Family & Professional Conference
We plan to be back in person in 2022! Our event is scheduled for June 23-25 in collaboration with Cook Children’s Hospital in Fort Worth, Texas. This 3-day event is unique in that it is designed to unite all groups committed to improving the lives of those with Dravet syndrome – including families, caregivers, clinicians, researchers and professionals in the pharmaceutical industry. There will be speaker presentations on the latest advances in research as well as sessions with up to date information impacting patient care (CME & CNE credits are available for healthcare professionals) as well as sessions on caregiver and family concerns. This event allows the opportunity to foster new relationships and collaborations, both for families and professionals. Of course, we will be continually monitoring the pandemic situation and will take extra precautions at the event to keep our community safe. Registration opens in late January. Be sure to bookmark our conference page – www.dsfconference.org – and check back later this month for updates!
- In-Person Fundraising Events
We are confident that conditions will begin to improve and allow us to host previously postponed as well as launch new events in 2022! Dates are being finalized, but you can expect gala events later this year in:
- Houston, TX
- Peoria, IL
- Frisco, TX
- Philadelphia, PA
- North Salem, NY
We also expect several Steps Toward a Cure walk and race events in the fall. If you are interested in hosting a fundraising event near you, we have several programs that make the process fun and easy and includes planning and execution assistance from our staff. Email us for more details on how you can get involved.