Wilhelm Foundation

We are very happy to introduce Gavin Monahan from Western Australia as one of Wilhelm Foundation’s #HugoFellows. Gavin brings outstanding skills, dedication, and a strong collaborative spirit to the Undiagnosed Hackathon. His ability to work with complex information, think deeply, and contribute with precision makes him a very important part of the team working to help find answers for families living with undiagnosed diseases. The Hugo Fellows program was created by Wilhelm Foundation to support the next generation of deeply committed clinicians, scientists, data specialists, innovators, and experts working to solve undiagnosed diseases. The Fellows will continue to contribute to the #UndiagnosedHackathon and to the work between events, helping us build long-term collaboration for People Living With Undiagnosed Diseases PLWUD. The Hugo Fellows are named in memory of beloved Hugo Cederroth. Thank you, Gavin, for bringing your knowledge, dedication, and collaborative spirit to this important work. #HugoFellows #UndiagnosedHackathon #WilhelmFoundation #UndiagnosedDiseases #PLWUD #Diagnosis #Collaboration #Undiagnosed International Rare Diseases Research Consortium (IRDiRC) RARE Revolution Magazine® RARE Youth Revolution Medscape Education Beacon for Rare Diseases paul lasko Dave Pearce Gareth Baynam Garabet Yeretssian Raquel Peck 🇬🇧🇧🇷 Alexandra Heumber Perry Mary Jane Dykeman

One of the most encouraging developments for Wilhelm Foundation over the past six months has been the number of incredible people who have approached us wanting to collaborate, support our growth, and help expand our impact. Today, we are delighted to welcome Alexandra Heumber Perry to Wilhelm Foundation’s Advisory Council. Alexandra brings extensive experience in the rare disease sector and a strong track record of fostering meaningful partnerships, connecting stakeholders, and advancing initiatives that make a tangible difference for people living with rare and undiagnosed diseases and their families. As a member of our Advisory Council, Alexandra will provide valuable strategic insights and support the Foundation’s partnership and fundraising efforts through her expertise and extensive network. We’re incredibly grateful to have Alexandra join us at this exciting stage of our journey and can’t wait to see what this collaboration will achieve together! #UndiagnosedDiseases #PLWUD #AdvisoryCouncil #Collaborate #Support International Rare Diseases Research Consortium (IRDiRC) RARE Revolution Magazine® UDNI RARE Youth Revolution Medscape Education Dave Pearce Gareth Baynam Mary Jane Dykeman Rick Guidotti Zeynep Tumer Garabet Yeretssian Raquel Peck 🇬🇧🇧🇷 Heidi Bjornson-Pennell Tania Simoncelli

We are honoured to introduce Sofia Ourani from Cyprus as one of Wilhelm Foundation’s #HugoFellows. During the Undiagnosed Hackathon, Sofia showed exactly what the Hugo Fellows are about: outstanding expertise, deep commitment, and the determination to keep searching for answers. After the 48-hour Hackathon, collaborators are allowed to continue working with the data for a set period of time. Sofia continued searching for answers — and her dedication led to an answer for one of the participants. 🔔 We are introducing the Hugo Fellows in random order, and every one of them brings outstanding skills, dedication, and collaborative spirit. Together, they will help make the Undiagnosed Hackathon a real success. The Hugo Fellows are named in memory of Hugo Cederroth, and they represent the next generation of clinicians, scientists, bioinformaticians, geneticists, data specialists, and innovators working together to help solve the unsolved 60% of undiagnosed diseases. Welcome, Sofia. We are very proud to have you as one of our Hugo Fellows. #HugoFellows #UndiagnosedHackathon #WilhelmFoundation #UndiagnosedDiseases #PLWUD #Diagnosis #Collaboration #Undiagnosed International Rare Diseases Research Consortium (IRDiRC) RARE Revolution Magazine® RARE Youth Revolution Medscape Education Rare Disease Youth Association Beacon for Rare Diseases paul lasko Dave Pearce Gareth Baynam Garabet Yeretssian Raquel Peck 🇬🇧🇧🇷 Alexandra Heumber Perry Mary Jane Dykeman Heidi Bjornson-Pennell

Wilhelm Foundation has the great honour of introducing Yaroslav Kainov from the UK as one of our #HugoFellows. “We are living through an ongoing revolution in genome sequencing and interpretation that has generated an unprecedented volume of genomic data. Both the power and the limitations of this are particularly evident in rare disease genetics, where obtaining a diagnosis can be critical for specialised support, treatment, and informed reproductive choices. Despite this progress, millions of people living with rare diseases still remain undiagnosed. I am humbled and honoured to use my background in molecular genetics and RNA biology, as a Hugo Fellow of the Wilhelm Foundation, to help individuals and families affected by undiagnosed rare disorders progress towards a diagnosis and, hopefully, finally find answers.” — Yaroslav Kainov The Hugo Fellows are a group of young, brilliant, and deeply committed professionals who have already shown their expertise, open-mindedness, and collaborative spirit through the #UndiagnosedHackathon. Yaroslav has been deeply engaged throughout the Undiagnosed Hackathon and afterwards, continuing the work and staying involved in the effort to solve unsolved diseases. This is exactly the spirit of the Hugo Fellows: bringing expertise, curiosity, and dedication into the room, but also continuing the collaboration beyond the Undiagnosed Hackathon. Through this two-year fellowship, the Hugo Fellows will continue to bring their knowledge, energy, and commitment to the Undiagnosed Hackathon — helping strengthen international collaboration and supporting the work to solve the unsolved 60% of undiagnosed diseases. Yaroslav represents the next generation of specialists working across borders and disciplines to help create new diagnostic possibilities for People Living with Undiagnosed Diseases. The Hugo Fellows are named in memory of Hugo Cederroth. We are very proud and honoured to welcome Yaroslav Kainov as one of our Hugo Fellows, and we look forward to the important work ahead. #HugoFellows #UndiagnosedHackathon #WilhelmFoundation #UndiagnosedDiseases #PLWUD #Diagnosis #Collaboration #Undiagnosed Rare Disorders Society (Singapore) International Rare Diseases Research Consortium (IRDiRC) RARE Revolution Magazine® RARE Youth Revolution Medscape Education Beacon for Rare Diseases paul lasko Dave Pearce Gareth Baynam Garabet Yeretssian Tania Simoncelli Mary Jane Dykeman Shirlene Badger Wendy van Zelst-Stams Alexander Hoischen

Today, Wilhelm Foundation is honoured to introduce our next #HugoFellow Kristina Ibañez from Spain. "I am deeply motivated to contribute to the mission of the Wilhelm Foundation because I believe that every undiagnosed patient and family deserves answers. Throughout my work in rare disease genomics, I have seen how combining genomic and phenotypic data can help uncover diagnoses that may have been missed for years. Equally important is the close collaboration between clinicians, molecular scientists, bioinformaticians, genetic counsellors, and many other experts. Diagnosing rare and undiagnosed conditions often requires bringing together different perspectives, knowledge, and skills. Time and again, I have seen how teamwork and interdisciplinary collaboration are essential to connecting the pieces of the puzzle and finding answers for patients and families. While a diagnosis is not the end of the journey, it can change everything for patients and their families — providing clarity, ending uncertainty, connecting them with appropriate care and communities, and opening the door to future research and treatments. I would be honoured to work together with the Foundation and its collaborators to help advance this mission through collaborative genomic research and data analysis." —Kristina Ibañez Kristina brings outstanding expertise in genomics, bioinformatics, and undiagnosed diseases — exactly the kind of brilliant, open-minded and collaborative spirit that the Hugo Fellows represent. Through the Hugo Fellows, Wilhelm Foundation is building a more sustainable way to continue the work of the Undiagnosed Hackathon between events and across countries. Our Fellows are young, deeply committed specialists who have already shown that they want to use their skills to help People Living With Undiagnosed Diseases. The Hugo Fellows are named in memory of beloved Hugo Cederroth. We are very proud and grateful to welcome Kristina as one of our Hugo Fellows, and we look forward to seeing the difference she will continue to make in the room at the Undiagnosed Hackathon. #HugoFellows #WilhelmFoundation #UndiagnosedHackathon #PLWUD #UndiagnosedDiseases #Genomics #MakeTheInvisibleVisible International Rare Diseases Research Consortium (IRDiRC) RARE DISEASES INTERNATIONAL UDNIMedscape Education RARE Youth Revolution RARE Revolution Magazine®Fujitsu Research

Wilhelm Foundation is delighted to recognize Paul Marcogliese, PhD from Canada as one of the Hugo Fellows. ”I am continually inspired by the Undiagnosed Hackathon’s commitment to bringing researchers and people living with undiagnosed disease together in pursuit of answers. Its focus on collaboration, innovation, and accessible diagnosis for all makes it deeply impactful” —Paul Marcogliese Paul has participated in Wilhelm Foundation's two latest #UndiagnosedHackathons — at Mayo Clinic, USA (2025) and in CDFD, Hyderabad India (2026) — and in both, he has contributed outstanding expertise, curiosity, and collaborative spirit. The Undiagnosed Hackathon brings together clinicians, scientists, bioinformaticians, geneticists, data specialists, innovators, and people living with undiagnosed diseases — all working side by side in pursuit of answers. Paul represents exactly what the Hugo Fellows initiative is about: brilliant, deeply committed professionals helping to strengthen the future of the diagnostic field and make a real difference for People Living With Undiagnosed Diseases (PLWUD). The Hugo Fellows are named in memory of Hugo Cederroth. We are proud to welcome Paul as one of Wilhelm Foundation’s Hugo Fellows and look forward to continuing this important work together.   #HugoFellows #WilhelmFoundation #UndiagnosedHackathon #PLWUD #RareDiseases #UndiagnosedDiseases #MakeTheInvisibleVisible International Rare Diseases Research Consortium (IRDiRC) RARE DISEASES INTERNATIONAL Fondazione CHOPS Malattie Rare ETS Rare Disorders Society (Singapore) Chiesi Global Rare Diseases Ipsen Academy Rare Disease RARE Revolution Magazine® Medscape Education Dave Pearce Mary Jane Dykeman Zeynep Tumer Gareth Baynam Garabet Yeretssian Raquel Peck 🇬🇧🇧🇷 Tudor Groza Robert Allaway

Wilhelm Foundation’s fifth Undiagnosed Hackathon will take place in Singapore — and we have already broken a record. 🌏 #Collaborators from 36 countries have applied to participate in the #UndiagnosedHackathon, representing Asia, Australia, Latin America, North America, Africa and Europe. This is what the Undiagnosed Hackathon is about: bringing brilliant minds together across borders, disciplines and continents to help People Living With Undiagnosed Diseases #PLWUD There are only two days left before we close the application form. https://lnkd.in/dV5dkmmH 🎥If you have not yet heard about our Undiagnosed Hackathon, please watch this video and see why this work matters. https://lnkd.in/gkzt4KkW The Undiagnostic Hackathon will take place in Singapore from 17 to 20 September. #UndiagnosedHackathon #WilhelmFoundation #UndiagnosedDiseases #PLWUD #RareDiseases #DiagnosticOdyssey #Genomics #GlobalCollaboration #Singapore #HugoFellows #MakeTheInvisibleVisible RARE Revolution Magazine® RARE Youth Revolution International Rare Diseases Research Consortium (IRDiRC) Undiagnosed Diseases Network (UDN) Rare Disease and Orphan Drugs Journal Medscape Education Precision Medicine Online ESHG - European Society of Human Genetics American Society of Human Genetics

Today, we have the great honor to introduce our next Wilhelm Foundation Hugo Fellow: Marissa Ellingson, USA. “The Undiagnosed Hackathon shows what’s possible when international expertise and advanced genomic technologies and tools come together with one goal: finding answers for people living with undiagnosed diseases. In Rochester and in Hyderabad, it was an honor to work side by side with more than 100 multidisciplinary experts for 48 hours, sharing knowledge and ideas with each other, and helping to end the diagnostic odyssey for several individuals and their families.” —Marissa Ellingson Marissa has been outstanding and has already contributed her amazing skills at the two latest #UndiagnosedHackathon. She first participated at the Undiagnosed Hackathon in collaboration with Mayo Clinic in 2025 in USA, and then again at the Undiagnosed Hackathon in collaboration with AVPN, BRIC - Centre for DNA Fingerprinting and Diagnostics (CDFD) and Sir Ganga Ram Hospital India, Hyderabad, India, in 2026. One important mission of the Undiagnosed Hackathon is that #HugoFellows bring their expertise, open-mindedness, and collaborative spirit into the room — and it is fantastic to see this in all of our Hugo Fellows. Wilhelm Foundation’s Hugo Fellows will participate in at least one Undiagnosed Hackathon each year, helping us build continuity, sustainability, and impact across our global work for People Living With Undiagnosed Diseases #PLWUD. At both Hackathons, Marissa brought not only her expertise, but also her dedication, kindness, and deep commitment to helping People Living With Undiagnosed Diseases. The Hugo Fellows are named in loving memory of Hugo Cederroth, whose joyful spirit brought happiness wherever he went and continues to inspire this work. We are so proud and honored to welcome Marissa Ellingson as one of our 11 Hugo Fellows. Would you like to meet the Hugo Fellows in person and put your skills to the test at the next #UndiagnosedHackathon in Singapore from 17 to 20 September? The application is still open until 15 June. https://lnkd.in/dV5dkmmH Follow Wilhelm Foundation to meet all the Hugo Fellows in the coming weeks. #HugoFellows #WilhelmFoundation #UndiagnosedHackathon #PLWUD #MakeTheInvisibleVisible RARE Revolution Magazine® RARE Revolution Magazine® International Rare Diseases Research Consortium (IRDiRC) Undiagnosed Diseases Network (UDN) EURORDIS-Rare Diseases Europe Rare Disease and Orphan Drugs Journal Medscape Education Precision Medicine Online ERDERA

Today, we have the great honor of introducing German Demidov, PhD as one of our Hugo Fellows. "My dedication to the field of undiagnosed genetic diseases began in 2014, right at the start of my bioinformatics career, when I was tasked with identifying cryptic genetic variants in a neonatal screening program. Since then, I have been on a continuous journey to develop more sophisticated bioinformatics tools capable of uncovering the most elusive genetic mutations. Today, far too many genetic diagnoses are still missed by standard bioinformatic pipelines. As a Hugo Fellow, my mission is to improve them—closing the diagnostic gap and finally providing answers to the patients and families who remain undiagnosed." — German Demidov German has participated in three of Wilhelm Foundation’s #UndiagnosedHackathon and at every single Hackathon he has made a real difference in the room. Each time, he has shown exactly what the Hugo Fellows are about: excellence, brilliance, dedication, collaboration, and a deep commitment to helping People Living With Undiagnosed Diseases. His expertise, generosity, and way of working with others have contributed greatly to the spirit and impact of the Undiagnosed Hackathon, and we are proud and honored to welcome him as part of the Hugo Fellows. The Hugo Fellows represent the next generation of clinicians, scientists, bioinformaticians, geneticists, data specialists, and innovators working together to help solve the unsolved 60% of undiagnosed diseases. Follow Wilhelm Foundation to meet all 11 Hugo Fellows in the coming weeks. If you would like to participate at the next Undiagnosed Hackathon in Singapore, September 17–20, the application is here: https://lnkd.in/dV5dkmmH #HugoFellows #WilhelmFoundation #UndiagnosedHackathon #PLWUD #MakeTheInvisibleVisible #PLWUD #UndiagnosedDay #DiagnosticOdyssey #Unsolved Rare Disease and Orphan Drugs Journal RARE Revolution Magazine® RARE Youth Revolution Rare Disorders Society (Singapore) ERDERA EURORDIS-Rare Diseases Europe RARE DISEASES INTERNATIONAL National Organization for Rare Disorders International Rare Diseases Research Consortium (IRDiRC) Global Genes Medscape Education Biohub Illumina PacBio Oxford Nanopore Technologies

Wilhelm Foundation’s Hugo Fellows project was born from a beautiful idea — and the idea came from Dave Pearce, Chair International Rare Diseases Research Consortium (IRDiRC) during a flight to Dubai after the 4th Undiagnosed Hackathon in Hyderabad. Dave has played, and continues to play, a deeply important role in the Wilhelm Foundation and in the #UndiagnosedHackathons. With his vision, warmth, scientific leadership, and ability to bring people together, he has helped shape the Undiagnosed Hackathon into what it is today: a place where collaboration, compassion, and cutting-edge science meet to help People Living With Undiagnosed Diseases #PLWUD. The #HugoFellows are young, brilliant, and deeply committed professionals who have already contributed their expertise to the Undiagnosed Hackathon. They represent the next generation of clinicians, scientists, bioinformaticians, geneticists, data specialists, and innovators working together to help solve the unsolved 60% of undiagnosed diseases. Named in memory of Hugo Cederroth, who brought happiness wherever he went and whose joyful spirit will always be remembered, the Hugo Fellows will help carry this work forward — with energy, excellence, and hope. We are deeply grateful to Dave Pearce for imagining this project with us, and for his continued dedication to Wilhelm Foundation, the Undiagnosed Hackathon and all People Living With Undiagnosed Diseases. #HugoFellows #WilhelmFoundation #UndiagnosedHackathon #PLWUD #UndiagnosedDisease #UndiagnosedDay #MakeTheInvisibleVisible #IRDiRC Rare Disease and Orphan Drugs Journal RARE Revolution Magazine®Rare Disorders Society (Singapore) Fondazione CHOPS Malattie Rare ERDERA EURORDIS-Rare Diseases Europe RARE DISEASES INTERNATIONAL National Organization for Rare Disorders