Swiss Rare Disease Day 2024: Insights from the ProRaris Event at the Inselspital Bern
On March 2nd, 2024, the event “Internationaler Tag der seltenen Krankeiten in der Schweiz” took place at the Auditorium Ettore Rossi, Inselspital Bern, to commemorate the 14th International Rare Disease Day in Switzerland. Organized by ProRaris, the symposium gathered around 150 individuals, including patients, caregivers, healthcare professionals, and representatives from various healtcare realated organizations.
The symposium commenced with a warm welcome from Yvonne Feri, President of ProRaris, along with Prof. Dr. Jean-Marc Nuoffer, Head of the Center for Rare Diseases at Inselspital Bern, and Matthias Michel, a Member of the Swiss Parliament and Co-President of the IG Rare Diseases. This introductory session set the stage for a day filled with insightful presentations and discussions.
Local initiatives: Empowering communities
One of the key highlights of the event was the discussion on local initiatives in regions such as Ticino and Valais, illustrating how grassroots organizations can be established to provide support for individuals with rare diseases. These examples underscored the importance of community-driven efforts in addressing the unique challenges faced by those affected by rare diseases.
KOSEK: Enhancing care for Rare Diseases
A key presentation of the symposium was dedicated to highlighting the efforts of KOSEK (Nationale Koordination Seltene Krankheiten), a platform focused on improving the care and support for individuals with rare diseases. Speakers emphasized the importance of collaboration among stakeholders and the role of KOSEK in strengthening cooperation, supporting self-organization, and recognizing specialized centers and registries for rare diseases.
National initiatives: Advancing Rare Disease Management
Further discussions centered on the establishment of a national registry for rare diseases and the development of a national concept for addressing these conditions. Presentations from experts in the field, including Prof. Dr. Claudia Kuehni, Cheryl von Arx, and Thomas Christen, shed light on ongoing efforts to enhance the understanding and management of rare diseases in Switzerland.
Pharmaceuticals engagement: Allies in Rare Disease Care
The symposium also addressed the crucial role of pharmaceutical companies in supporting individuals with rare diseases, emphasizing that they should be seen as allies rather than adversaries. Additionally, there was recognition of the efforts by the Federal Office of Public Health in developing solutions for rare diseases, drawing parallels with successful initiatives in pediatric oncology.
Collaboration is key: Driving change in Rare Diseases
Throughout the event, there was a recurring theme of the need for collaboration among all stakeholders, including healthcare providers, patient organizations, pharmaceutical companies, and policymakers. It was acknowledged that while rare diseases present complex challenges, concerted efforts and collective action are essential to drive meaningful change.
Shaping the future of Rare Disease care
In conclusion, the Rare Disease Day symposium at Inselspital Bern provided a platform for meaningful dialogue, collaboration, and knowledge sharing among stakeholders in the rare disease community. Moving forward, it is imperative that these discussions continue to inform policy decisions, research initiatives, and healthcare practices to improve outcomes for individuals affected by rare diseases.
How FFI-Ventures can help
In navigating the landscape of rare diseases, collaboration between pharmaceutical companies, patients, and caregivers is paramount. At FFI Ventures, we recognize the importance of fostering these partnerships to drive meaningful change and improve the lives of those affected by rare diseases.
Through our innovative approach, we facilitate engagement between pharmaceutical companies and patients/caregivers, enabling a deeper understanding of their journeys and moments that matter in their lives. By identifying areas where services can make a difference, we strive to create impactful solutions that enhance patient outcomes and quality of life.
At FFI Ventures, we are committed to driving positive change in the rare disease community by fostering collaboration, understanding, and support. Together, we can make a difference and bring about meaningful improvements for those affected by rare diseases.
References:
https://www.proraris.ch/de/seltenen-krankheiten-save-the-date-samstag-marz-532.html