Alexandra Heumber Perry, CEO of Rare Diseases International, recently posted on LinkedIn:

“A pleasure to participate on behalf of Rare Diseases International in the panel Health for All at ChangeNOW with the CEO of UCB Jean-Christophe Tellier and the CEO of Cancer Research UK Michelle Mitchell. Fruitful discussion moderated by Devika Gopal Agge, in which RDI made the following points:

• Climate change and rare diseases: both share an unexpected connection, as climate shifts can impact disease patterns, exacerbating the challenges for those with rare conditions. Climate-related events like extreme weather can disrupt healthcare access and resources, affecting diagnosis and treatment for individuals with rare diseases, underscoring the intricate interplay between environmental factors and health outcomes in vulnerable populations.
• Innovation and Research: Innovation and research play a pivotal role in advancing rare disease care. It’s crucial to prioritize funding and support for research initiatives aimed at developing new treatments and therapies tailored to the unique needs of rare disease communities.
• Importance of Global Collaboration: International collaboration is essential in tackling rare diseases effectively. By fostering partnerships between governments, NGOs, healthcare providers, and pharmaceutical companies, we can enhance diagnosis, treatment, and support services for rare disease patients on a global scale.
• AI and Rare Diseases: The future of rare disease care holds immense promise with AI. Collaborative efforts between stakeholders and Rare Diseases International are essential in harnessing AI’s potential to advance healthcare for individuals with rare diseases, paving the way for greater inclusivity and improved outcomes globally.
• Ethical use of AI in rare disease care requires safeguarding patient privacy and ensuring transparency in algorithm development to maintain trust and uphold patient rights.
• Innovative solutions are crucial for financing health systems to enhance care and treatment for People Living With Rare Diseases (PLWRD). By leveraging creative funding mechanisms such as public-private partnerships, crowdfunding platforms, and targeted research grants, we can ensure equitable access to specialized treatments, diagnostics, and support services. These initiatives are vital for addressing the unique challenges faced by PLWRD and advancing comprehensive healthcare solutions tailored to their needs.”

Source: Alexandra Heumber Perry/LinkedIn