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Leukodystrophy Awareness Month

Brain pops are available, order yours today! You could even hold on to them and hand them out on Halloween as a tasty awareness treat! ORDER BRAIN POPS Looking just to raise funds for the mission? Join our Team Fundraising goal! TEAM FUNDRAISING

Global Genes LIVE! A RARE Patient Advocacy (un)Summit

Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. Due to the COVID-19 global pandemic, and the threat this poses to the health and safety of our rare disease community, we are replacing this highly-anticipated event with the Global Genes LIVE! …

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CTX Family Forum

Virtual

United Leukodystrophy Foundation and the CTX Alliance Invite You to a Virtual CTX Community Forum. 2:00-3:00 PM (Eastern US Time) The Unlock CTX PFDD meeting held September 14, 2021 was a landmark event for the CTX community. Thanks to all who participated -- especially those who shared candid portraits of what it is like to …

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2021 Pediatric Palliative Care WebinarsBeyond Words: Using Expressive and Integrative Therapies as Communication Tools

Children experience their world through play, creativity, and imagination. It is how they learn and process, and provides mastery over their environment. Play becomes all the more important when faced with adversity or trauma. In a medical setting, expressive therapies can be used to help children understand and process their illness and can even have …

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Cure GM1 International GM1 Virtual Community Conference

Virtual

Cure GM1 is extremely proud to present a virtual conference for the GM1 community and families, biotech professionals, academic researchers, and physicians. Cure GM1 is the only 501(c)(3) entirely dedicated to GM1 gangliosidosis patient advocacy and GM1 research. Our virtual conference will be a series of webinars throughout the month of September. https://registration.socio.events/e/gm1

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