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 the hashtag #Resolution4Rare.

Download the Week 7 ( 23 September ) Messages here:

Sample posts:

LinkedIn:

All over the world, persons living with a rare disease face stigma and discrimination due to their condition.

A WHA Resolution on Rare Diseases asking for a Global Action Plan on Rare Diseases will help increase education of rare diseases to dispel stigma and discrimination and facilitate inclusion in schools, workplaces, health care and other spaces to ensure that Persons Living with a Rare Disease have equitable access to the opportunities they choose to pursue.

[____] joins RDI in calling for a #Resolution4Rare to ensure equitable access to opportunities for #PLWRD.

Twitter:

#PLWRD face stigma and discrimination globally. A WHA Resolution for a Global Action Plan will increase education, reduce stigma, and promote inclusion in schools, workplaces, and healthcare. Join us in calling for a #Resolution4Rare. #HealthForAll #WHA

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.