These guidelines, and companion eBook adapted for families, offer a broader look at the care and specialists recommended for people with leukodystrophies. Unlike Dr. Bernard’s 2021 ULF presentation linked above, the supportive care information is not specific to 4H Leukodystrophy, so not everything will apply. To focus on the relevant information, you can Ctrl/Command + F on your keyboard to search “4H” or “POLR3.” The paper and eBook are intended to help you and your local medical care team achieve the highest quality of life for your loved one.

Read More:

Adang, Laura A et al. “Revised consensus statement on the preventive and symptomatic care of patients with leukodystrophies.” Molecular genetics and metabolism vol. 122,1-2 (2017): 18-32. doi:10.1016/j.ymgme.2017.08.006[AK1] [SS2]

Living with Leukodystrophy eBook (Vivir con Leucodistrofia libro electrónico)