Report from ECRD and RDI virtual conferences

RDNZ’s Chief Executive Lisa Foster attended two major European conferences in May. This participation continues New Zealand’s involvement with the global movement to ensure the rare disorder community gets the best possible healthcare.

The European Conference on Rare Diseases is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. Over 1,500 attendees took part from 57 countries.

One of the opening statements by Stella Kyriakides, European Commissioner for Health & Food Safety summed up the conference ethos:

“In the coming years we are carrying out a real stocktaking exercise, we will be guided by the Rare 2030 Foresight Study. We need now to take lessons from Covid-19. We know that patients will be the driving force of our rare disease policy.”

The Rare 2030 Foresight Study is a two year Eurordis-led study to propose policy options leading to 2030 that will provide a better potential future for people living with rare disorders. This has been formulated with extensive input from over 200 experts in varied fields and shortened into four quadrants.

The learning that a single health issue such as a virus has the power to block entire global economies was discussed as it highlights the intricate link between healthy societies and healthy economies.

As part of the need for collective voices, collaboration to strengthen all countries to head in the same direction and improved diagnosis was discussed. Practical opportunities to connect globally to help with a better future for all people with rare diseases were highlighted.

Rare Diseases International (RDI) held their sixth annual meeting online in mid-May. This is a forum for patient advocates and other stakeholders to hear about the latest actions putting rare diseases on the global health agenda and understand how they too can get involved.

This conference followed on with similar themes regarding global collaboration, coordination and improving access, care and diagnosis. It discussed the current international frameworks and potentials and a view from Spanish group on ‘Advocating for the integration of rare diseases in national policies within the framework of UHC – the case of Spain’ by Alba Ancochea, provided highlights on the achievements from continued advocacy and engagement with key politicians and officials during the previous decade. This was key to successful outcome with UN Political declaration inclusion of rare diseases for Universal Health Coverage.

There was clarity about the current scope of work undertaken by RDI with the World Health Organisation and how through the current MOU they are focused on gaining an international definition of rare disorders for a standardised descriptor, key prevalence and incidence figures. RDI is also working with WHO to improve access to rare disease medicinal products, use of the essential medicines and invitro diagnostics list.

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