Rare Disease Day
Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
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ULF Support Group: Parents of Affected People
ULF Support Group: Parents of Affected People
This is a session for parents of people affected by leukodystrophies, often their caregivers. This session WILL NOT be recorded. Time Mar 30, 2022 07:00 PM in Central Time (US and Canada) Parents of Affected Children, Register here: https://bit.ly/3qZlWxS
ULF Support Group: Newly Diagnosed
ULF Support Group: Newly Diagnosed
An open discussion for families who recently received their leukodystrophy diagnosis. No topic is off limits and we encourage participation at the attendees comfort level. This session WILL NOT be recorded. Time Mar 30, 2022 07:00 PM in Central Time (US and Canada) Adults and Newly Diagnosed Families, Register here: https://bit.ly/3Ga88Xu
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