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July 2018
Hunter’s Hope’s 2018 Family Symposium
Freedom & Hope This event will be a chance for patients and families affected by Krabbe disease and other leukodystrophies to come together for to build community, spread hope, and share stories in an environment free from judgement. The family conference will be preceded by a invitation-only medical symposium that will present that latest research and treatment updates for Krabbe disease and other leukodystrophies. For registration information, please contact Hunter's Hope via email at [email protected].
Find out more »October 2020
KrabbeConnect’s Virtual A Million Dreams Gala
The A Million Dreams Gala A Virtual Event This virtual gala is a valuable fundraiser event for KrabbeConnect, a nonprofit organization dedicated to supporting the Krabbe disease patient community and finding a cure. This event brings together patients, industry allies, scientific experts, and other friends of the organization. Though normally an in-person event, this year's gala has been moved online in order to protect participants from COVID-19. This event will include a silent auction fundraiser that will go live on October 5th.…
Find out more »KrabbeConnect’s Patient-Focused Drug Development Meeting
Patient-Focused Drug Development Meeting with the FDA Organized by the National Organization for Rare Disorders (NORD), this meeting will be a critical opportunity for patients to communicate directly with regulators at the US Food and Drug Administration (FDA). This is an opportunity for the Krabbe disease community to articulate their experiences and help the FDA understand what improvements in treatment would truly look like. This event will involve collaboration from a number of patient advocacy groups, and all Krabbe disease…
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