It was an immense privilege to attend Rare Disease International’s “A Blueprint for Leaving No One Behind”. Amongst the distinguished guests present were Her Majesty Queen Letizia of Spain and Her Majesty Queen Silvia of Sweden opening our meeting.
As a council member of Rare Disease International (RDI), and with my GSNV and Asia Pacific Alliance of Rare Disease Organisations (APARDO) focus, I brought a local, regional and global lens to the meetings which featured in attendance Health Ministers, WHO, World Bank and European Union representatives and UN Member State representatives and advocates. The RDI meeting highlighted the commitment to people living with rare diseases from Governments in Spain, Qatar, Malaysia and Sweden and by patient advocacy groups in Kenya, Malaysia, Croatia, Colombia, Spain and China. All, coming together focused on positive change initiatives and reinforcing the importance of collaborating and partnering to achieve this.
I loved the focus on action and patient groups as partners and leaders who are achieving and demonstrating their importance in making a difference. It was humbling to hear all the work around the world and engage in conversations that highlighted the similarities we share such as the challenges our community faces – wherever they are and whatever the health care system they live with, it’s the scope and scale that varies.
I came away determined and committed to collaborative effort as the only way forward. Importantly, it was universally recognised across a range of meetings I attended – covering vulnerable groups across the world: women, people living in poverty and rare diseases that engaging stakeholders including community inclusively as partners in designing, implementing and monitoring health policies and healthcare is essential for positive change.
Throughout all meetings, access to funding and translation of research and knowledge into practice were highlighted as two key challenges in implementing universal health coverage for vulnerable groups. So now it must be about building partnerships at all levels to drive and lead change – globally, regionally and locally.
Proudly, I look forward to continuing engagement and being a positive part of this change.
A recap of the 21st September UN High-level Meeting on Universal Health Coverage can be viewed here.
Monica Ferrie
Chief Executive Officer
Genetic Support Network Victoria (GSNV)