Ready for New Treatments!
SCN is ready for action! We look back on a great and inspiring work conference held on June 13th, with contributors and participants from across the neuromuscular disease field. With a lot of enthusiasm and a strong sense of connection, we got to work on three key themes: development, availability, and implementation of new treatments.
Coen Ottenheijm and Maartje Huijbers presented a proposal for collaboration in preclinical research under the first theme. The aim is to join forces within the neuromuscular field in the Netherlands and stimulate drug development. This ambitious plan was met with great enthusiasm, and its outline was further developed during the discussion round. This laid the foundation for a new collaboration, closely aligned with SCN’s themes of talent retention and trial-readiness.
Umesh Badrising and Nadine van der Beek shared the results of a field-wide inventory for theme 2, showing that improving availability of treatments centers on accelerated access and broad implementation. During the discussion round, ten key bottlenecks were identified, ranging from the complex process of approval and reimbursement to opportunities for lobbying, visibility, and involvement in trial design. Suggestions for SCN’s role in addressing these challenges were prioritized.
Nicole Voet and Michael van Es highlighted the need to organize care within networks in light of emerging new treatments. Building on earlier scenario planning by the SCN board and experiences from the “Spierziekten Zorgnetwerk,” the discussion round explored opportunities and requirements for primary, secondary, and tertiary care.
After a SMART-formulated summary of the discussion rounds, conversations continued in full swing during the sunny networking drinks.
The following day, the board identified the key projects per theme. This project roadmap was plotted on a timeline and linked to our policy plan. With this, we know exactly what lies ahead in the coming years!
Coming together is a beginning, Keeping together is progress, Working together is success.
– Henry Ford
