POLR3 Caretakers/4H Leukodystrophy
A private Facebook Group helpful for sharing and receiving resources with and from other families. According to some 4HL families, this is most helpful when newly diagnosed.
Yaya Foundation for 4H Leukodystrophy
A Facebook Page for status and progress updates of the organization. Here you will be able to find the newest research, connect to other 4HL families, join fundraising efforts, and stay informed on the latest Yaya Foundation innovations.
Yaya Foundation for 4H Leukodystrophy blog/updates
More detailed information on upcoming events such as #4HLFamily calls, research updates, and more.
Living with Leukodystrophy eBook
The Calliope Joy Foundation, an incredible organization focused on curing leukodystrophies, partnered with the world’s leading leukodystrophy specialists to create a guide for caregivers, nurses, and doctors. The Calliope Joy Foundation has generously given The Yaya Foundation permission to share this eBook for free.
Some of our families have found this foundation to be an invaluable resource to provide their children with memorable experiences in-between appointments and continuing care. For more information regarding this resource, visit their website here or search the Facebook group listed above.
Courageous Parents Network
A platform that offers support to families caring for children with serious illnesses/conditions. Parents are able to reach out to other families to either offer or provide advice and care tips. Not specific to 4HL but can easily be used for more general care.
For US families, as you navigate the Medicaid journey it can be useful to work with a complex care pediatrician or primary care pediatrician who works with medically complex children to help file the proper paperwork. To learn more about advocating for your child and Medicaid, you might find it useful to go to Family Voices and learn more about resources in your state. Be prepared to be diligent, applying for Medicaid is often challenging.
Since each US state has different policies and procedures for applying to Medicaid, check out the website Kid Waivers to learn about the guidelines for your home state so you can get started.
Register For The Fee Webinar: The Diagnostic Odyssey For Individuals With Leukodystrophies.