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Webinar: Importance of autopsies in leukodystrophies’​ by Marianna Bugiani

Virtual

Educational webinars on RARE neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN EuroNMD) and the European Academy of Neurology (EAN). The speaker is Neuropathologist at the Amsterdam University Medical Center, the Netherlands. Time Jul 12, 2022 03:00 PM in Amsterdam, Berlin, Rome, …

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Hunter’s Hope 2022 Medical and Family Symposium

Holiday Valley Resort – Ellicottville, NY

The Hunter’s Hope Medical and Family Symposium is a time for Leukodystrophy families, medical providers, newborn screening lab personnel, industry partners, and researchers from around the world to gather for learning, sharing, and Hope.

Leukodystrophy Awareness Month

September is Leukodystrophy Awareness Month!  A leukodystrophy is a type of disease that causes degeneration of the myelin, or "white matter" of the brain.  Every individual requires healthy production of myelin for speed and accuracy of nerve impulses within the brain.  Without a healthy myelin sheath, your nerves can’t send and receive signals properly.

Kicks for Clark and Kids with Rare Diseases 2022

Katz Park Location Katz Park 393 West Dresser Road, DeKalb, IL, United States

Kicks for Clark is an adult kickball tournament and raffle raising money and awareness for rare leukodystrophies. About this event _____________________________________________________________________________________________ On September 10th, 2022 at Katz Park in Dekalb, Clark and his family and friends will be hosting a kickball tournament to raise money and awareness for The United Leukodystrophy Foundation! Events for the …

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Caregiver Online Support Group

Virtual

We look forward having you join us! We are excited to connect with each other to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions are …

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ALSP Community Webinar

Virtual

Plan to join the free ALSP Community Webinar on January 26!   Dear community members,   On January 26th, 2023, from 12:30 -1:30 PM EST United Leukodystrophy Foundation will join with other leaders in patient advocacy for a very special ALSP update webinar update that is being sponsored by Vigil Neuroscience, a clinical-stage biotechnology company …

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Caregiver Online Support Group

Virtual

We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …

Caregiver Online Support Group Read More »

Featured Featured

Caregiver Online Support Group

Virtual

We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …

Caregiver Online Support Group Read More »