The VI FSHD SPAIN Congress, held in Madrid on April 4 and 5, marked a significant success for the FSHD community. With 130 attendees, it represented a notable increase in participation compared to 82 attendees in Valencia in 2024.
Another great success was the participation – for the first time in the history of the congresses – of a representative from the Ministry of Health of the Community of Madrid. Celia García Menéndez, General Director of Humanization, Care, and Patient Safety expressed interest in learning about the challenges patients face and offered a new avenue of communication with regular meetings and the signing of an agreement between FSHD Spain and the Community of Madrid.
The program addressed the disease from different perspectives by renowned Spanish neurologists, biochemists, and biologists.
- Pilar Camaño explained the challenges of diagnosis and emphasized the need for genetic analysis.
- The role of nutrition and microbiota were discussed, highlighting the importance of a balanced diet, and reviewing the results of the clinical study of antioxidants in Montpellier.
- Presentations also focused on bone health, rehabilitation, technological innovations in wheelchairs, and the impact of FSHD on the respiratory system.
A special attention was given to the role of patients in finding a cure for FSHD. Dr. Muelas explained the vital role of a patient registry project and talked about the patient registry on the way in Spain, which is being funded by FSHD Spain. On this occasion she emphasized the importance of the participation of neurologists, health centers, and patients as a key element in FSHD research.
Finally, a comprehensive analysis of scientific advances in the study of the disease was provided, providing an update on the Fortitude clinical trial, new therapies based on antisense oligonucleotides, and advances in muscle regeneration. It is a great privilege for us to have Dr. Alexandra Belayew, discoverer of DUX4, once again join us, who reviewed the various avenues of research currently being pursued.
As a conclusion, the Congress was not only a great step from the point of view of attendees, the high quality speeches given by top experts in FSHD but also because it paved the way to more dialogue with the Health policymakers in the Community of Madrid and tightened the ties of our community of patients, doctors and scientists in Spain highlighting the necessity of working together towards a cure.
Written by FSHD Spain
FSHD Spain | Asociación Española Distrofia Facioescapulohumeral