Newly Diagnosed?
Navigating a New Diagnosis
A CUL3-related neurodevelopmental disorder diagnosis can be a lot to process. Whether you’ve been searching for answers for a long time or this is unexpected news, you are not alone.
This page is here to offer guidance and resources to help you take your next steps. Below, you’ll find a three-step checklist to get started, followed by a collection of printable materials, and helpful links. Whether you’re a parent, caregiver, or individual with CUL3, we hope these resources help you feel informed, supported, and connected.
Importantly, these resources are for informational purposes only and should not replace medical consultation or advice.
STEP 1
FORM CONNECTIONS & GET SUPPORT
Want to chat with a peer? - contact us.
Stay informed and connected through our mailing list:
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Receive our newsletter with resources, community highlights, and upcoming events.
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Get notified about special events including virtual meet-ups and talks with researchers and medical professionals.
Explore the map to see where families are located, and submit your own location.
Join the online support group.
Request access to our shared folder - where we keep community-submitted resources and recordings of presentations.
It's natural to have many questions about CUL3. To help you navigate this journey, we've compiled a variety of resources, including:​
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A visual introduction
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A guide to reading a genetics lab report
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Printable information sheets
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A list of helpful links
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A list of published research articles
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Blog posts on a variety of topics
Explore these resources at your own pace - knowledge is a valuable tool!
STEP 2
LEARN ABOUT CUL3
STEP 3
GET INVOLVED
Participate in Research
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Sign up for the Simons Searchlight research program.
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Keep in touch to learn about other research opportunities as they arise.
Volunteer​
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Join our Family Advisory Committee to support advocacy efforts.
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Assist in various roles - contact us to get involved.
Donate​
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Make a donation to support our mission.
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Contribute to fundraising efforts. ​
Learning Some Basics
CUL3 Visual Introduction
This presentation is a visual introduction to CUL3-related neurodevelopmental disorder, designed to explain key terms and help improve understanding.
This document was created by Emma Wagner, a Genetic Counseling Master’s student at the Medical College of Wisconsin. We sincerely thank her for developing this resource and for her contributions to the foundational knowledge used in other materials.
Understanding Your Genetic Lab Report
We created this guide to help you better understand the basics of a genetic lab report and feel more confident when reviewing your results. You can use it as a companion document while re-reading your genetic testing results or discussing them with a healthcare provider.
Printable Resources
Patient Advocacy Group Brochure
This printable brochure provides a brief overview of our mission, CUL3-related neurodevelopmental disorder, and ways to connect with our organization.
(For best printing results, select 'flip on short edge.')
CUL3 Information Sheet
This pamphlet offers a clear and accessible overview of CUL3-related neurodevelopmental disorder for families, patients, and healthcare providers. Feel free to share it with providers who may be unfamiliar with the condition.
Helpful Links
These links will redirect you to websites with information specific to CUL3.
These links will redirect you to websites with information regarding rare genetic disorders, disability, autism, and epilepsy.
IMPORTANT: These links are provided for informational purposes only and do not imply endorsement by CUL3 Support & Awareness. We are not responsible for the accuracy of content of external sites. Please contact the respective site for any questions regarding their content.
Published Research
PubMed is a National Institutes of Health (NIH) online database. It is free to use, and has a searchable collection of medical and scientific research articles. It includes links to full text content from PubMed Central and publisher web sites.​
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You can also see a list of applicable published research articles on CUL3 on our published research papers page.
How You Can Help
Raise Awareness
Here are some of the ways you can help raise awareness for CUL3-related neurodevelopmental disorder and our organization:
Follow and like our social media pages and share posts to increase awareness.
Inform your physicians, therapy providers, other medical professionals, and educational staff to increase their knowledge and understanding of CUL3.
Share our website with family, friends, and others to help spread awareness.
If you are an individual, parent, or caregiver affected by CUL3, consider sharing your story for the website.
Get Involved
Here are some of the ways you can get involved with our organization:
Contact us to express your interest in joining the Family Advisory Committee.
Assist with organizing events or fundraising efforts to support our mission.
Share your experiences with us as an individual or as a parent/caregiver of someone with a CUL3-related condition.
Participate in surveys and other research to help us improve understanding.