INTERNATIONELLT

International partners

Rare diseases know no borders. International collaboration is therefore essential for sharing knowledge and experience, strengthening the patient voice, and working together on issues that can improve healthcare, treatment and quality of life for people living with rare health conditions.

Here are some of the key international organisations and projects in the rare disease field that we collaborate with:

SBONN – Nordic Network of Rare Disease Patient Organisations

SBONN brings together Nordic umbrella organisations in the rare disease field to exchange knowledge and experience. The collaboration covers areas including national strategies and access to diagnostics and treatment. Among other initiatives, the network has developed a joint position statement on national action plans and is a partner in the Nordic Rare Disease Summit. Click here to visit SBONN’s website.

JARDIN – Joint Action for Integration of European Reference Networks into EU Member States’ Healthcare Systems

JARDIN is a European collaboration aimed at integrating the European Reference Networks (ERNs) for rare diseases into national healthcare systems. The goal is to make it easier for patients to access specialist expertise from across Europe. The project runs from 2024 to 2026 and is developing, among other things, common treatment guidelines and recommendations on how healthcare systems can better meet patients’ needs. Click here to visit the JARDIN website.

EURORDIS

EURORDIS is a European non-profit organisation that brings together rare disease patient organisations from 77 countries. Through a united voice, the organisation works to influence European policy and improve areas including diagnosis, research, healthcare and social care, as well as access to treatment.

EURORDIS also advocates for national action plans for rare diseases and is working towards a common action plan at EU level. Click here to visit the EURORDIS website.

RDI – Rare Diseases International, the Global Alliance of Persons Living with a Rare Disease

Rare Diseases International (RDI) is a global umbrella organisation for rare diseases. It brings together patients, families and patient organisations, connecting key stakeholders to strengthen the voice of the rare disease community worldwide. RDI advocates for the needs of people living with rare diseases at the global level. Two important milestones are:

United Nations: UN Resolution on Persons Living with a Rare Disease, which highlights the challenges faced by people living with rare diseases and calls on Member States to address their needs through concrete action.
World Health Organization: WHO resolution recognising rare diseases as a global health priority, establishing rare diseases as a priority area for action to advance equity and inclusion.

Click here to visit the Rare Diseases International website.