VOLUME 29, ISSUE 3 • SEPTEMBER 2025.
Advancing Huntington's disease care globally: The EHDN/MDS Fellowship Program
The European Huntington's Disease Network (EHDN) and International Parkinson and Movement Disorder Society-European Section (MDS-ES) fellowship program continues to train healthcare professionals in Huntington's disease (HD) worldwide. Since 2013, this initiative has strengthened clinical expertise across continents where HD patients are underserved and training is very limited, leading to HD specialists committed to improving patient care in their home countries.
Knowledge and experience sharing for young professionals
The program trains young professionals such as neurologists, psychiatrists, psychologists, physiotherapists, clinical geneticists, and other healthcare professionals working in HD clinical practice through knowledge and experience sharing. Fellows spend six weeks in highly regarded, multidisciplinary HD clinics across Europe, gaining hands-on experience in comprehensive patient care. Fellows also have the opportunity to experience other aspects of HD care, including visiting nursing homes and connecting with lay associations.
Evidence-Based Success
The comprehensive Fellowship Impact Project evaluation in 2023-2024 demonstrated significant success, with higher than 80% response rates from past fellows, hosts, and organizational teams. Findings revealed overwhelming satisfaction among participants, with fellows particularly valuing learning opportunities, collaboration prospects, and tangible improvements in their HD practice.
Host clinics valued fellows' enthusiasm and motivation. The program's lasting impact is demonstrated by many past fellows who have maintained collaborations with their host clinics and organised educational initiatives in their home regions. These include workshops and educational events in Armenia, Georgia, and Iran, as well as an online workshop for the Arabic countries during the pandemic, all featuring renowned international HD speakers. These ongoing partnerships highlight how the initial six-week placement creates enduring professional relationships that benefit the broader HD community.
Building a Global HD Community
The program's success extends beyond individual training to creating lasting networks. The inaugural Fellowship Alumni event at the EHDN & ENROLL HD meeting in Strasbourg (September 2024) brought past fellows and hosts together, leading to discussions about the fellowship program, future collaborations, and improvements.
Fellowship Alumni meeting, EHDN & ENROLL HD 2024 Strasbourg
Recent initiatives include pre-placement alumni meetings where experienced fellows share practical advice with newcomers, creating supportive peer-to-peer learning. The program also encourages active participation in EHDN activities, working groups, and task forces, and integrating fellows into the global HD research and care community.
Some recent end-of-placement feedback from fellows:
“I have learned so much in diagnosis, counseling patients and relatives, holistic care of patients, follow up and research in HD.”
“Now I can confidentially suspect a diagnosis of HD when I see and review a patient, and subsequently request for genetic testing after proper genetic counseling.”
“The case analysis sessions were a very good opportunity for all professionals involved in the care of patients to give their opinion and comment from their point of view about the evolution of each case, providing ideas that would help the team build better intervention strategies for each case.”
“I learned how to better interact with patients and how to allay their fears.”
Continuous Innovation
Based on recommendations from the Fellowship Impact Project, the program has undergone various improvements, including streamlined applications, centralized placement coordination, and enhanced support of hosts. Feedback is also provided by both fellows and hosts after each placement, thus facilitating any minor adjustments needed for future cohorts.
The MDS-ES partnership remains crucial, providing access to broader movement disorder specialist networks worldwide. This partnership model shows how international organizations can work together to address healthcare gaps in a rare disease such as HD. EHDN and MDS continue to work closely, having delivered several educational courses over the years, and more recently, a 2-day HD online course series together with MDS-PAS (August 2025).
Looking Forward
Host clinics in the UK, Spain, and France are currently welcoming the 2025 fellows, ensuring successful knowledge exchange and capacity building. As the HD community prepares for the next EHDN & ENROLL HD meeting in Krakow in October 2026, the fellowship program remains a cornerstone of EHDN's mission of advancing research, facilitating clinical trials, and improving care globally.
Applications for the 2026 fellowship program will open in September 2025.
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