BRAINS FOR BRAIN FOUNDATION

EU Legislative Interests

While the Brains for Brain Foundation is not directly involved in crafting legislative or political proposals, their activities align closely with various aspects of European Union (EU) policies and initiatives regarding health and research, particularly in the context of rare diseases. The EU has recognized the importance of addressing rare diseases, leading to several key legislative and policy frameworks that indirectly impact the work of foundations like Brains for Brain. Here are some of the principal EU legislative and policy areas relevant to the mission of the Brains for Brain Foundation: 1. EU Framework on Rare Diseases: The EU has established a comprehensive framework to tackle rare diseases which includes the "EU Communication on Rare Diseases: Europe's Challenge" and the "Council Recommendation on an Action in the Field of Rare Diseases." These documents advocate for improved diagnosis, treatment, and access to care for rare disease patients. They call for the creation of national plans for rare diseases in each member state and emphasize the importance of research and cross-border healthcare cooperation. 2. Horizon Europe: This is the EU’s key funding program for research and innovation with a budget of €95.5 billion (2021-2027). It includes specific calls for proposals related to health and the societal challenge of health, demographic change, and well-being. Horizon Europe focuses on fostering an environment where scientific knowledge can thrive. It offers significant opportunities for foundations like Brains for Brain to secure funding for research into rare genetic brain diseases. 3. European Reference Networks (ERNs): ERNs are networks connecting healthcare providers and centers of expertise across Europe to facilitate discussions on complex or rare diseases that require highly specialized treatment and a concentration of knowledge and resources. For rare brain diseases, networks such as ERN-RND (Rare Neurological Diseases) would be particularly relevant. They provide a platform for sharing knowledge and best practices, potentially benefiting the research and clinical practices that the Brains for Brain Foundation advocates for. 4. Orphan Medicinal Products Regulation: This EU regulation provides incentives for the development of drugs for rare diseases, known as orphan drugs. The regulation includes protocol assistance, fee waivers, and market exclusivity extensions which are crucial for encouraging pharmaceutical companies to invest in developing treatments for rare brain diseases. 5. Cross-Border Healthcare Directive: This directive allows for EU patients to seek treatment in other EU countries and, crucially, facilitates cooperation and coordination among EU countries in healthcare provision. It helps patients with rare diseases, like those targeted by the Brains for Brain Foundation, access specialized services that might not be available in their home country. 6. EU Health Programme: This programme aims to build a healthier future for Europeans. Its objectives include improving health information and knowledge, strengthening healthcare systems, and facilitating access to better and safer healthcare for EU citizens. The programme can provide funding and support for initiatives that align closely with the goals of the Brains for Brain Foundation, particularly those that raise awareness and improve quality of care for children with rare brain diseases. To influence these areas, the Brains for Brain Foundation could engage in advocacy at the EU level, foster collaborations with EU institutions, apply for EU funding, and participate in EU-led research initiatives and policy discussions. Such engagement would further the foundation’s aim of advancing research and improving treatment and care for rare genetic brain diseases.

Communication Activities

The Brains for Brain Foundation, although not directly involved in the legislative aspects, actively participates in communication activities linked to EU policies through various events, campaigns, and publications specifically tailored to raise awareness about rare brain diseases and promote research in this field. Their engagement reflects and supports several key EU initiatives and strategies on health and rare diseases. 1. Organizing and Participating in Conferences and Workshops: The foundation frequently organizes international workshops and conferences that gather researchers, healthcare professionals, policymakers, and patient representatives from across Europe. These events serve as ideal platforms to disseminate recent scientific findings, discuss challenges in diagnosis and treatment, and promote EU initiatives such as cross-border healthcare cooperation. These gatherings are essential in fostering a shared understanding and a collaborative approach that is in line with EU health policies. 2. Public Awareness Campaigns: Brains for Brain Foundation runs several public awareness campaigns aimed at increasing the visibility of rare brain diseases. These campaigns are crucial in educating the public and raising awareness about the EU’s health agendas, such as the Orphan Medicinal Products Regulation and the importance of cross-border healthcare provided by ERNs. These campaigns often leverage EU Health Programme funding to maximize outreach and effectiveness. 3. Collaborative Research Projects: By participating in and sometimes leading multi-country research consortia, the foundation contributes to the objectives of Horizon Europe. These research projects often result in publications and reports that are shared across the EU and globally, underlining the vital role of international cooperation in addressing rare diseases. The foundation also strategically aligns its research objectives with those of Horizon Europe to increase its impact and relevance. 4. Policy Advocacy and EU Engagements: Although indirect, the foundation’s activities also encompass engaging with EU policymakers and stakeholders through roundtable discussions and policy briefing sessions. By presenting research findings and patient stories, the foundation influences the EU’s approach to rare diseases and advocates for increased funding, better policies, and more effective legislative measures that can benefit rare disease patients. 5. Educational Materials and Publications: The foundation also focuses on creating high-quality educational materials and publications that are widely disseminated across the EU. These materials not only help in educating healthcare professionals and researchers but also align with the EU’s health literacy objectives by making information accessible to patients and the general public. 6. Partnership with EU Institutions: Through strategic partnerships with EU institutions and alignment with European Reference Networks, the foundation ensures that its activities are complementary to EU efforts. By participating in ERN initiatives and collaborations, Brains for Brain can contribute to shaping EU-wide best practices in treatment and care for rare diseases. Through these multifaceted activities, the Brains for Brain Foundation not only enhances its visibility and impact but also significantly contributes to the European Union's overarching goal of improving health outcomes for citizens with rare diseases. This symbiotic relationship amplifies the reach and effectiveness of both the foundation’s and the EU’s efforts in tackling rare genetic brain diseases.

Interests Represented

Does not represent commercial interests

Member Of

UNIVERSITÁ DI PADOVA EUROPEAN REFERENCE NETWORK FOR INHERITED METABOLIC DISEASES ,METABERN AZIENDA SANITARIA UNIVERSITARIA FRIULI CENTRALE

Organisation Members

www.metab.ern-net.eu www.unipd.it https://asufc.sanita.fvg.it