Help! What's Next?
This is no doubt a challenging and scary time. We are here to help you navigate what is next in your child’s health and story. Here’s what you can expect in the days and months ahead:
We can help!
This page will be expanded and live by February 11th.
We are preparing pathways for What’s Next starting with
- Newborn screening – screen positive result
- Clinical symptoms, how do I get a diagnostic confirmation and access therapy?
- MLD suspected, diagnosis in process
- My doctor said my child has Leukodystrophy
- Other questions
- Learn about MLD. Take some time to learn about MLD and treatment options including gene therapy. To read information about MLD, you can find more at the MLD Overview page. We also have a very simple layperson’s video overview of MLD.
- Connect with MLD Experts. Find a regional specialist or connect with some of the nation’s foremost experts on MLD.
- Build a local MLD care team and support network. This can include your PCP, various specialists, your family and friends. Find people you can lean on for tangible and emotional support as you begin this new chapter.
- Investigate Available Therapies. In conjunction with your care teams, learn about various therapeutic options to provide your baby with a good quality of life.