As we roll into 2021, I wanted to remind our community of the many important resources that DSF offers to help patient families on this complex medical journey. We recognize that you deal with a lot each day and DSF is here to help. Brief overviews on each program can be found below or you […]
DSF Programs & Resources for Patient Families Read More »
Wow – what a year! I think we can all agree that 2020 was hard. Even for our community that is accustomed to constantly having to adapt and change plans, as well as go through periods of social isolation for the health and well-being of our loved ones, 2020 presented challenges that none of us
The American Brain Coalition (ABC) is a nonprofit organization comprised of the United States’ leading professional neurological, psychological, and psychiatric associations and patient organizations. Together, they seek to advance the understanding of the functions of the brain, and to reduce the burden of brain disorders through public education and advocacy. With an established presence in
American Brain Coalition Read More »
Original Post: March 13, 2020 Updated: April 9, 2020 Dravet Syndrome Foundation (DSF) has updated these FAQs from our good friends and collaborators at the Tuberous Sclerosis Alliance to address concerns from the Dravet) community and healthcare professionals regarding the COVID-19 outbreak. For more comprehensive and up-to-date information refer to the Centers for Disease Control and Prevention (CDC) website. SYMPTOMS
Coronavirus Disease (COVID-19) Questions & Answers for the Dravet Community Read More »
It is not uncommon in a rare disease like Dravet syndrome (DS) to have a physician prescribe a medication for “off-label” use by their patient. This means that the drug is not being used in the manner specified in the FDA’s approved package labeling and is being used for a disease that it is not
Belviq recall and off-label use in the Dravet community Read More »
The International Classification of Disease (ICD) is a list first introduced in 1948 by the World Health Organization (WHO) and is coordinated by the Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC). It is a system used by healthcare providers to classify and code diagnoses, symptoms, and
New ICD-10 Codes for Dravet Syndrome! Read More »
Nominations are now open for the 2020 Ciara’s Spirit of Hope Award! I hope you will consider nominating an individual whose dedication through their volunteerism to DSF has been outstanding and inspiring to you. From 2010-2015 the Spirit of Hope award was presented to volunteers at DSF’s annual gala, Ciara’s Butterfly Bash, which was named
Ciara’s Spirit of Hope Award Nominations Now Open! Read More »
The Alliance for Regenerative Medicine (ARM) is the leading international advocacy organization championing the benefits of engineered cell therapies and genetic medicines for patients, healthcare systems, and society. As a community, ARM builds the future of medicine by convening the sector, facilitating influential exchanges on policies and practices, and advancing the narrative with data and
Alliance for Regenerative Medicine Read More »
This week’s guest blog post comes from Katie Holcomb. Katie is the Manager of PTSD and Coping Initiatives for Ryan’s Case for Smiles, a non-profit dedicated to helping children and their families cope with life changing illnesses and injuries today, while building resilience for the future. In short, to feel better to heal better. She
The Emotional Toll of Having an Ill Child: 6 Myths About PTSD Read More »
Your personal experience is an important resource that offers valuable insight into the patient journey and the needs of the Dravet syndrome (DS) community. While each of us has a compelling story to tell, the decision to share your story is a very personal one. There are two important but very different ways that you
The importance of sharing the patient and family experience with Dravet syndrome Read More »
