We are so glad you’ve found us!
Our entire Skraban-Deardorff Syndrome (SKDEAS) community extends our biggest, warmest welcome to you and your family. You are here, exactly where you belong, and you are not alone.
Receiving your Skraban-Deardorff Syndrome diagnosis is a monumental step. Whether you’re receiving the SKDEAS diagnosis early in a child’s life or you’re stumbling upon it later in life, diagnosis can be a powerful means to better understand the symptoms of SKDEAS and identify the best interventions and therapies to help you to thrive.
Let us help you settle in by guiding you through some ways to get started.
LEARN all that you can about Skraban-Deardorff Syndrome. While SKDEAS is still a relatively new diagnosis, our devoted research team is continually learning more and sharing their findings. Be sure to check out our “About” page, the Children’s Hospital of Philadelphia website, and our listing in the NORD Rare Disease Database.
FOLLOW the SKDEAS Foundation on Facebook and Instagram in addition to signing up for our monthly family newsletters to stay up-to-date on all SKDEAS Foundation news.
REGISTER your family through our Parent/Child Registration Form. In order to maintain an up-to-date record of people currently living with WDR26 related diagnoses, our organization would like to collect basic data about each family in our community. Questions regarding the registration process can be directed to info@skdeas.org.
CONNECT with other SKDEAS families from all across the globe by joining our private online community. We cannot wait to meet you and your family–to learn alongside you, to support you, and to celebrate with you. Reach out to welcome@skdeas.org for your personal invitation to connect.
LISTEN to the stories of other SKDEAS families by tuning in to our Smiles Included podcast. You will also find transcriptions of all the Smiles Included podcast episodes on our “Podcast” page.
RESEARCH is an essential piece of the SKDEAS Foundation. Be sure to read up on our latest research projects here on the SKDEAS website. If you’re interested in meeting with our research team, please contact welcome@skdeas.org to get connected with our team, either for an email consultation or an appointment (offered virtually or in-person).
CONTRIBUTE to the SKDEAS Foundation. All voices are warmly welcomed! Sign-up for invites to our monthly general foundation meetings or reach out directly to a board member to learn more about what we do and how you can help. We would be honored if you shared our mission with your friends and family. And know that any financial gift, big or small, directly helps us on our mission to improve the lives of those living with Skraban-Deardorff Syndrome.
PARTICIPATE in our events, including our biennial family meeting at Children’s Hospital of Philadelphia (in person or virtually), our biannual virtual town hall meetings, and local fundraising events held by families. See what’s coming up on our calendar by visiting our “Events” page, or reach out to our events committee to learn about hosting your own local fundraising event.
Feeling overwhelmed? You’re not alone. Let us support you! Reach out directly to our welcome coordinator at welcome@skdeas.org.
Advancing the Science. Smiles Included.
A message from the National Organization for Rare Disorders (NORD)
A rare diagnosis can be a frightening and isolating experience, whether you are the patient or a caregiver for a loved one. However, NORD has created a video providing tips for newly diagnosed patients and families as they begin their journey down this new road. As always, one of the primary themes is NORD’s key message: Alone we are rare. Together we are strong.
NORD’s Patient and Caregiver Resource Center:
https://rarediseases.org/living-with-a-rare-disease/