World Health Assembly Resolution on Rare Diseases

RDI is launching a campaign for a World Health Assembly (WHA) Resolution on Rare Diseases in 2025.

Why a WHA Resolution?

Persons Living with a Rare Disease continue to face challenges including delays in diagnosis, limited access to treatments and care, and financial burdens. A WHA Resolution on Rare Diseases will aim to address these challenges through a comprehensive global framework that includes raising awareness, improving diagnosis, enhancing access to care and treatment, and fostering research and development of therapies.

What is the process?

How can I Participate?

1. Advocate at the National Level

According to your level of engagement with your Ministry of Health, we recommend that you contact the Minister(s) of Health  to request an initial meeting to discuss the WHA Resolution on Rare Diseases and why they should sponsor it, or at least support it. You may want to share the briefing note and fact sheet in your initial communications and present the slide deck at the meeting. Please note that we are providing these recommendations and materials as starting points, but you may also wish to adapt any of these materials to your organization’s contexts. In particular, you can provide Member States any facts or statistics specific to your country or region. We also remain available to join an on-line meeting with your contacts at the Ministry of health, if this can help.

Download our Advocacy Toolkit:

Briefing Note

PRINTABLE FACT SHEET on rare diseases

Editable fact sheet on rare diseases

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

SLide Deck

Estos documentos estarán disponibles próximamente en español.

Estes documentos estarão brevemente disponíveis em português.

Ces documents seront bientôt disponibles en français.

2. Raise Awareness on social media

As part of our collective advocacy, we are launching a social media campaign to show both the common challenges and the diversity of our rare disease community. Over the next few months, we will be sharing customizable graphics for you to add specific rare disease statistics or other information for your country. We will then share these graphics on the same day across the world with a common hashtag.

To be added to our social media mailing list and whatsapp group, please sign up here or email us.

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3. Join Our TASK FORCE

We will be putting in place an ad hoc Task Force on the upcoming 2025 WHA Resolution on Rare Diseases. The purpose of this Task Force is to :

  • Establish and coordinate engagement activities between RDI members and their countries
  • Map experiences and recommendations from the RD community for engaging with national Ministers of Health
  • Analyze relevant successful and failed advocacy and communication strategies to identify pitfalls and success factors
  • Collaboratively draft text for the WHA Resolution on Rare Diseases and outline for a Global Action Plan on Rare Diseases

If you would like to be more involved in the resolution process, we invite you to apply for this Task Force to share your expertise and ideas.