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nossos parceiros

2024

2024-04-18     Registry data available in OMOP, Leigh syndrome symposium registration is open, and more news!

2024-03-21     PDCD registry partnership, ECHS1 research, C-path mito taskforce is growing, Rare disease day recap, and more!

2024-02-15     Rare Disease Day, Rare Bears, Registry and C-Path updates!

2024-01-30     Announcement: Our 2nd Registry Paper is PUBLISHED - Interoperability of Leigh Syndrome Patient Registry Data with Regulatory Submission Standards

2024-01-24     Mito taskforce, New patient resources, 2024 plans!

2024-01-11     Announcement: C-Path Mitochondrial and Metabolic Diseases taskforce is LAUNCHED!

2023

2023-12-19     Closing out 2023!

2023-11-20     New published paper and more news this November!

2023-10-26     Communities for a Cure and More October News!

2023-09-26     LS symposium recap, Mito Awareness Week, and lots of gratitude this September!

2023-09-07     Announcement: Leigh Syndrome Global Patient Registry paper is PUBLISHED!

2023-08-15     Mito awareness week, LS symposium, Mito meeting with C-path, Free genetic testing, and more updates!

2023-07-20     Register for Leigh syndrome symposium, C-path press release, new resource, and more news!

2023-06-20     June 2023 News and Updates!

2023-06-05     Announcement! Aboutleighsyndrome.com is LIVE!

2023-05-22     Our story is featured on WebMD and more news!

2023-04-18     Drug repurposing updates, conference updates, patient registry updates, and more!

2023-03-16     Leigh Syndrome medical network, family planning guide, clinical trials page, research studies opportunities, conference, and much more!

2023-02-21     Rare Disease Day 2023 a week away from today!

2023-01-27     Corporate advisory council announcement, Empower and Inspire conference is back in 2023 - register now!

2022

2022-12-12     New announcements and 2022 wrap-up!!!

2022-11-29     Giving Tuesday 2022

2022-11-11     Drug Repurposing News, Patient Registry Updates, and New Ways to Give!

2022-10-06     Conference recap, Registry latest news, Research opportunity, and more updates!

2022-09-07     Conference coming up, Grant announcements, Fundraiser, Research opportunities, and more!

2022-08-11     Conference agenda ready, patient registry, and other news!

2022-06-28     Please register for the conference, registry updates, and more!

2022-06-28     Please register for the conference, registry updates, and more!

2022-06-28     Please register for the conference, registry updates, and more!

2022-05-19     REGISTRATION IS OPEN - EMPOWER AND INSPIRE: Understanding and Accelerating Research for Leigh Syndrome

2022-04-20     SAVE THE DATE - EMPOWER AND INSPIRE: Understanding and Accelerating Research for Leigh Syndrome

2022-03-28     Registry giveaway, Birthday club, and other news!

2022-02-23     Cure Mito Foundation News

2022-02-10     Cure Mito Foundation News

 
2021

2021-11-28     Cure Mito Foundation News

2021-11-08     Cure Mito Foundation News

 

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