UHC Advocacy and Rare Disease


RDI and EURORDIS have partnered to develop the Universal Health Coverage for Rare Diseases (UHC4RareDiseases) campaign. The campaign aims to enable patient organisations and the public to call for Universal Health Coverage (UHC) policies and programmes that include rare diseases.

The #UHC4RareDiseases toolkit offers practical tools that can be used to raise awareness and encourage policy makers to address rare diseases in order to fulfill their commitment to UHC and Health for All.

UHC ensures all people, everywhere, can access quality health services with financial protection.

All UN Member States have agreed to try to achieve Universal Health Coverage by 2030, as part of the Sustainable Development Goals. In 2019, member countries adopted the UN Political Declaration on UHC. The Declaration includes rare diseases! It commits all governments to strengthen efforts to address rare diseases in their plans to achieve UHC.

UHC4RareDiseases comes in the lead up to UHC Day (December 12th) and the Rare Disease Day campaign which calls for equity for patients and families living with a rare disease.

By using the UHC4RareDiseases advocacy and communication tools, rare disease communities around the world can urge their governments to include rare diseases in their countries’ UHC strategies and essential health service packages.

How to use the #UHC4RareDiseases Toolkit

Watch the #UHC4RareDiseases Tutorial

Presented by EURORDIS CEO Yann Le Cam and RDI Director Flaminia Macchia

Download the #UHC4RareDiseases Toolkit

1. FACT SHEET on UHC and rare diseases

* For an editable version in Word format, email [email protected]

2. LETTER TEMPLATE to send to policymakers/ MPs/ local or national Health Ministries

* For an editable version in Word format, email [email protected]


Key Documents and Milestones:

Watch and Learn

Leveraging Universal Health Coverage to Advance Rare Disease Policy

Durhane Wong-Rieger, RDI Chair and President of the Candanian Organization for Rare Disorders (CORD) talks about advocating for the integration of rare diseases in national policies within the framework of UHC.

Alba Ancochea, CEO of Federacion Española de Enfermedades Raras (FEDER), shares the Spanish experience and how rare disease organisations were able to promote UHC in national policy.