Wilhelm Foundation

What is an Undiagnosed Hackathon? Have you ever wondered how an Undiagnosed Hackathon can make a difference for People Living With Undiagnosed Diseases (PLWUD)? With over 350 million people worldwide affected by undiagnosed diseases, this unique event brings together multidisciplinary teams of clinicians, bioinformaticians, molecular biologists, scientists, developers, AI experts, and other brilliant minds. Their goal? To tackle some of the most complex medical mysteries and provide new pathways to diagnosis. Stay tuned for the exciting announcement at the end of our video, where we’ll reveal the location and date of the next Undiagnosed Hackathon! Join us in the mission to end the diagnostic odyssey for PLWUD. Together, we can make a real impact! Pioneered by Wilhelm Foundation https://lnkd.in/gnPPZYDE #Undiagnosed #UndiagnosedHackathon #PLWUD RARE DISEASES INTERNATIONAL Rare Disease Ghana Initiative EURORDIS-Rare Diseases Europe ERN ITHACA Radboudumc Alexander Hoischen Wendy van Zelst-Stams Lisenka Vissers Ann Nordgren Angelica Maria Delgado-Vega Anna Lindstrand Karolinska Institutet Karolinska Universitetssjukhuset AIME LUMAKA prince makay PhenoTips Orion Buske

Just recently we wrapped up the celebrations of our 25th anniversary, we’d like to end it with a bang: Today we are launching our 3-year Strategy, which you can all find here https://lnkd.in/d4XfMUNW At the Wilhelm Foundation, we are incredibly proud of the legacy we built with the support of so many incredible people and collaborators, and we are also very excited about what lies ahead. Our new strategy is a bold vision for the future, a plan rooted in sustainability and growth, designed to expand our impact and reach even further! Once again, thank you to everyone who has helped our mighty community of 350 million People Living With Undiagnosed Diseases PLWUD #undiagnoseddiseases. Here’s to the next 25 years and beyond. Join us. Be part of a remarkable journey #PLWUD #Undiagnosed Rare Disease and Orphan Drugs Journal Rare Disease Ghana Initiative RARE DISEASES INTERNATIONAL EURORDIS-Rare Diseases Europe UDNI International Rare Diseases Research Consortium (IRDiRC) ERN ITHACA JARDIN Joint Action

Celebrating 10 Years of Global Impact! Ten years ago, driven by the urgent need to bring answers to families living with undiagnosed diseases, the Wilhelm Foundation united experts to share knowledge, debate data, and explore innovative approaches to accelerate diagnoses. What started as a small gathering, alongside Dir William A. Gahl (NIH) and Dir Domenica Taruscio (ISS), has grown into a global movement! As we mark the 10th Anniversary of the International Conferences on Undiagnosed Diseases in Seoul (and celebrate the 25th anniversary of the Wilhelm Foundation), we are incredibly grateful to everyone who has collaborated and joined the Undiagnosed Community. ❤️ Special thanks to Professor Jong Hee Chae and her amazing team at SNUH & UDNI, who helped make the Gala an unforgettable event! We are filled with hope and excitement for the future. Together, we can make a difference for the 350 million People Living With an Undiagnosed Disease (PLWUD). #WilhelmFoundation #PLWUD #GlobalMovement #Undiagnosed #RareDiseases #UndiagnosedCommunity #TogetherWeCan #HopeForTheFuture UDNI RARE DISEASES INTERNATIONAL International Rare Diseases Research Consortium (IRDiRC) Rare Disease Ghana Initiative Chan Zuckerberg Initiative Gareth Baynam Dave Pearce Wendy van Zelst-Stams Shirlene Badger Shinya Yamamoto Peter Coleman Domenica Taruscio Jacob Grange Shahida Moosa Neha Sanghi Ratna Dua Puri AIME LUMAKA Jangsup Moon Tinatin (Tika) Tkemaladze Rachel Yang, M.D. Ph.D Chiuhui Mary Wang https://lnkd.in/dvG4XjYe

A teaser from the first day the10th anniversary of the International Conference on Undiagnosed Diseases in Seoul, Korea Wilhelm Foundation started the conferences 2014 in collaboration with Dr Gahl and Dr Taruscio. The local host this year is Prof Jong Hee Chae and her team and they have made a fantastic first day! #undiagnosed #WilhelmFoundation #MakeADifference #SupportUndiagnosedDiseases #collaboration Gareth Baynam Wendy van Zelst-Stams Dave Pearce Eric Klee Ugur Ozbek Shahida Moosa Ratna Dua Puri Chiuhui Mary Wang Tinatin (Tika) Tkemaladze Dave Pearce AIME LUMAKA Kishore Hari Andra Stratton Heidi Bjornson-Pennell Madeline Pensiero Garabet Yeretssian Rick Guidotti Domenica Taruscio Liz Matejka Grossman Tania Simoncelli Raquel Peck 🇬🇧🇧🇷 Matt Bolz-Johnson Alexandra Heumber Perry UDNI RARE DISEASES INTERNATIONAL Rare Disease Ghana Initiative Rare Diseases South Africa EURORDIS-Rare Diseases Europe ERN ITHACA RARE DISEASES INTERNATIONAL International Rare Diseases Research Consortium (IRDiRC) https://lnkd.in/d6yDYT85

Wilhelm Foundation Celebrates 25 Years! We kicked off our 25th-anniversary celebration with the real heroes —children and parents from the Wilhelm Foundation’s Parent Group at this summer's Family Camp. Together, we can make a difference! https://lnkd.in/dM7pdPFq #undiagnosed #familycamp #parentgroup #25thanniversary #WilhelmFoundation25 #MakeADifference #SupportUndiagnosedDiseases Gareth Baynam Elizabeth Emma Palmer Angelica Maria Delgado-Vega Eric Klee Domenica Taruscio Ugur Ozbek Shahida Moosa Zeynep Tumer Tinatin (Tika) Tkemaladze Dave Pearce AIME LUMAKA Kishore Hari Andra Stratton Heidi Bjornson-Pennell Madeline Pensiero Garabet Yeretssian Rick Guidotti Liz Matejka Grossman Tania Simoncelli Raquel Peck 🇬🇧🇧🇷 Matt Bolz-Johnson Alexandra Heumber Perry RARE DISEASES INTERNATIONAL Rare Disease Ghana Initiative Rare Diseases South Africa EURORDIS-Rare Diseases Europe ERN ITHACA International Rare Diseases Research Consortium (IRDiRC)

Wilhelm Foundation is approved as a member of the International Rare Diseases Research Consortium (IRDiRC) Patient Advocacy Constituent Committee (PACC). It’s an honor and we are looking forward to work with IRDiRC Together we can make a difference! #Undiagnosed #Undiagnosedhackathon2024 International Rare Diseases Research Consortium (IRDiRC) UDNI RARE DISEASES INTERNATIONAL National Organization for Rare Disorders Rare Disease Ghana Initiative

For Wilhelm Foundation there is no diagnostic dead end! We can’t lean back when we know that 60% of the Undiagnosed Diseases that can’t to solved today and 350 million People are Living With an Undiagnosed Disease (PLWUD). Therefore we will have our 2nd Undiagnosed Hackathon next week June 6th- 8th in collaboration with Wendy van Zelst-Stams and her great team at Radboudumc, Nijmegen, the Netherlands. Read more about the Undiagnosed Hackathon and see all the amazing 120+ persons from 28 countries, who will contribute to try to find new ways and collaborations to solve the undiagnosed diseases. Thank you all! https://lnkd.in/dYK_ayyE #undiagnosed #undiagnosedhackathon Radboudumc

We are few, but we are many. At #WHA77, we were privileged to be able to share the voices not only of our panelists from the rare disease community, but also other RDI members from across the globe, in a video shown to nearly 100 policy makers, advocates, industry representatives and medical professionals at the start of our side event. We thank Lisa, the mother of a child with spinocerebellar ataxia from Rare Disorders NZ, Peris Mwangi of Rare Disorders Kenya who lives with a congenital melanocytic naevus, Yerany Aguilar Masis, a young leader from Enfermedades Raras Costa Rica's New Gen LATAM program, who lives with Larsen Syndrome, NIRMAL KHADKA🇳🇵of @Rare Diseases Society of Nepal, who lives with Muscular Dystrophy, and Cederroth Helene, Founder and President of Wilhelm Foundation, who advocates on behalf of families like hers who are affected by #undiagnosed diseases, for participating in our video and raising the voices of Persons Living with a Rare Disease.

Thank you ERN ReCONNET for raising awareness of Undiagnosed Day! This year, Wilhelm Foundation and UDNI have two events to raise awareness of the global undiagnosed community! The In-Person event at Harvard was in collaboration with UDNF. Both events are shared on Undiagnosed Day. Together, we can make a difference for the undiagnosed families around the world! Thank you ERN RECONNET 🫶 https://lnkd.in/dWmQKuwF #UndiagnosedDay #UndiagnosedDay2024 #Undiagnosed