Entries by Christine Kelly

Director of Family Support Announcement

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Chelsea’s Hope Welcomes First Director of Family Support We are thrilled to announce our first Director of Family Support is Niki Markou. She will be responsible for helping to successfully plan, implement, and continually improve Chelsea’s Hope’s support, registry coordination, and patient community support programs. We created this new role to better serve our mission […]

2023 Symposium Registration is Open Now!

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We are delighted to announce that the 2023 Symposium registration is open now. Please join us October 9-10, 2023, in the beautiful and historic city of Bologna. Lafora disease researchers and clinicians at the Instituto delle Scienze Neurologiche di Bologna IRCCS will host the 8th Annual Lafora Disease Science Symposium at the Relais Bellaria. You can […]

Probably Genetic Program: FAQs

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FAQs about Probably Genetic’s no-cost genetic testing program for pediatric epilepsy Who is Probably Genetic? Probably Genetic is a group of patients, geneticists, and engineers that seek to make genetic testing more accessible to rare disease patients. Their team partners with patient advocacy groups, such as Chelsea’s Hope, and biotech companies to launch no-cost genetic […]