🇲🇽 We're thrilled to welcome Graciela Méndez from Mexico to our board at the World Duchenne Organization. Her personal journey and dedication to supporting the DMD/BMD community make her a valuable addition. Being the founder of Enlace Distrofia Muscular Duchenne Becker AC, Graciela's expertise will help us better address the specific challenges in Latin America. 🤝 Welcome aboard, Graciela! https://lnkd.in/enzS4cG2
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After our successful Duchenne Care Conference 2023, when hundreds of health care professionals from more than 60 countries around the globe attended, save the date for the 2024 conference and register here: https://lnkd.in/dpW2ie3h
Duchenne care conference 2024: registration is now open • World Duchenne
https://www.worldduchenne.org
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The BIND project is a groundbreaking EU-funded initiative that connects 19 partners from Europe and Japan to improve characterisation of brain involvement in DMD and BMD. 🤝 Don't miss out on our latest updates, subscribe to our newsletter and stay informed! http://eepurl.com/g5c811
EU BIND
bindproject.us18.list-manage.com
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Everyone involved in Rare Diseases don't miss the Rare Disease Day on February 29th EURORDIS-Rare Diseases Europe
Only 3 days to go: Join the Rare Disease day and take action https://lnkd.in/ean-u2S7
Rare Disease Day 2024: Unite for change! Unite for equity! - EURORDIS
https://www.eurordis.org
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The fantastic Sally Hofmeister, WDO board member leading the Duchenne Community Advisory Board, presented at EUCROF24
Empowering Patients in Clinical Research at EUCROF24…… EUCROF would like to thank the speakers of the three presentations that made up the plenary session "Empowering Patients in Clinical Research". > Nothing about us without us! - The added value of involving patients/patient representatives in clinical research, presented by Sally Hofmeister of World Duchenne Organization. > Cross-border access for patients to clinical trials – the EU-X-CT initiative, presented by Susan Bhatti of Merck BV. > Patient Mediated Research - This Is Really Different, presented by Vincent Keunen of Andaman7 . Taking place in Prague from the 19-20 February next year, discover the full EUCROF24 programme here: https://lnkd.in/eMP3DzC6 #clinicalresearch #clinicaltrials #clinicaloperations #gcp #bigpharma #dct #eucrof24
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https://lnkd.in/ezuVUEte Happy and proud the paper on federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders is out Duchenne Parent Project EURO-NMD European Reference Network for Rare Neuromuscular Diseases World Duchenne Organization Duchenne Data Foundation
EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders - Orphanet Journal of Rare Diseases
ojrd.biomedcentral.com
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United Nations Officially Designates September 7 as World Duchenne Awareness Day Just now, the United Nations has marked a momentous milestone for the global rare disease community by officially designating September 7th as World Duchenne Awareness Day. The resolution was adopted by consensus unanimously by all Member States on November 29. The resolution was co-sponsored by 128 Member States, the highest number of co-sponsorships in the 78th session as of today for a resolution tabled by one country. We are incredibly grateful for Pat Furlong, Buddy Cassidy, Tareq Albanai and Rasha Alnaibari for their effort in this adoption. Additionally, we want to extend our gratitude to the many organizations, individuals and institutions who have sent in letters to their national Permanent UN Representative to support this resolution. https://lnkd.in/eDKb394T
United Nations Officially Designates September 7 as World Duchenne Awareness Day • World Duchenne
https://www.worldduchenne.org
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🌐 Today, the United Nations will vote on a groundbreaking resolution: adopting "World Duchenne Awareness Day." If passed, it will be the UN's first formal acknowledgement of a day dedicated to raising awareness about a rare disease. Join us in witnessing this historic moment! Tune in to the live stream, today at 10am Eastern Time / 16:00 Central European Time: https://lnkd.in/e9p2CV4e
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Pat Furlong and Buddy Cassidy spoke to UN diplomats about recognizing September 7 as World Duchenne Awareness Day. WDO is grateful for this initiative and is happy so many of our members responded to the request to send a letter to their permanent UN Representative. We look forward to November 29, when the request is being voted upon.
PPMD CEO and President Pat Furlong and Buddy Cassidy spoke yesterday in front of 85+ diplomats to encourage ambassadors to the United Nations and members of the World Health Organization to support a draft resolution to recognize September 7, as “World Duchenne Awareness Day''. The event was organized by Duchenne parent, Tareq M.A.M. Albanai, the Ambassador from Kuwait, and his wife and PPMD Board member Rasha Alnaibari, with the hope of raising global awareness of the challenges and needs faced by individuals and families in the rare diseases community. In her remarks, Pat emphasized, “By fostering a deeper understanding of this condition, we can empower communities, healthcare professionals, and policymakers to prioritize early diagnosis, intervention, and support for these individuals and their families.” The resolution will be considered for a vote at the November 29th UN General Assembly meeting. We hope to see the event live-streamed and will share details if so.
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