World Health Assembly Resolution on Rare Diseases

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. Leading up to the WHA in May, 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.

Editable Week 6 Message

Download the Week 6 (12 May) Message here:

You can access the template here to add your logo or translate the text to another language

Sample posts:

LinkedIn:

Why do I support the #Resolution4Rare? Because millions of people living with rare diseases still have no treatment options – in fact, 95% of rare conditions have no FDA-approved treatment.

The WHA Resolution on Rare Diseases is a critical step toward improving treatment options for the 300 million people living with a rare disease around the world. By recognizing rare diseases as a global health priority, it will drive more investment in research, accelerate drug development, and improve access to care.

BlueSky/Instagram:

Why do I support the #Resolution4Rare? Because 95% of rare diseases still have no approved treatment. This resolution is a vital step to make rare diseases a global health priority—driving research, drug development, and access to care for over 300 million people.

Editable Week 5 Message

Download the Week 5 (5 May) Message here:

You can access the template here to add your logo or translate the text to another language

Sample Posts:

LinkedIn:

Why support the #Resolution4Rare? Because rare diseases may be uncommon, but they have a profound impact – on children, adults, families and communities. It’s difficult to talk about death, especially when it comes to children, but for many families of children born with a rare disease, it is a terrible reality. Despite medical advances, one third of children born with a rare disease today do not survive to see their fifth birthday.

What can we do to improve outcomes for children living with a rare disease? Many tools exist to ensure the best possible outcomes for children born with a rare disease, such as newborn screening, but they are not enough. Similarly, innovative treatments are providing more hope to families than ever before, but too many children around the world do not have access to them due to limited availability or high costs. By working as a global community to ensure the adoption of the WHA Resolution on Rare Diseases and the implementation of a Global Action Plan, we can take a critical step towards ensuring that children born with rare diseases have the chance to live full lives. What about you? Why will you support the #Resolution4Rare?

Bluesky/Instagram:

Rare diseases may be uncommon, but they have a profound impact. Despite medical advances, one third of children born with a rare disease today do not survive to see their fifth birthday. Early diagnosis and access to treatment can change that. That’s why we support the #Resolution4Rare.

editable week 4 message

Download the Week 4 (28 April) Message here:

You can access the template here to add your logo or translate the text to another language

Sample posts:

LinkedIn:

Why support the #Resolution4Rare? Because 60% of people seeking a diagnosis for a rare condition remain undiagnosed, even after comprehensive investigations. Undiagnosed diseases are not just a statistic – they’re a global health crisis. Millions of individuals and families are left searching for answers, facing medical uncertainty, and struggling to access appropriate care. This gap in diagnosis delays treatment, limits research progress, and deepens health inequalities worldwide. We need urgent action to improve diagnostic pathways, invest in rare disease research, and ensure that no one is left behind. We support #Resolution4Rare for the millions of Persons Living with a Rare Disease and Persons Living with an Undiagnosed Disease around the world – because everyone deserves a diagnosis, a treatment plan, and a chance at a better quality of life.

Bluesky/Instagram:

60% of those seeking a diagnosis for a rare condition stay undiagnosed—even after full investigations. Undiagnosed diseases are a global health crisis. Everyone deserves answers, care, and hope. Support #Resolution4Rare to make sure no one is left behind.

EDItable Week 3 message

Download the Week 3 (22 April) Message here:

You can access the template here to add your logo or translate the text to another language

Sample posts:

LinkedIn:

Why do I/we support the #Resolution4Rare? Because 5% of the world’s population will be diagnosed with a rare condition during their lifetime, and yet rare diseases are often overlooked in health policies. That is why we need a WHA Resolution on Rare Diseases and a Global Action Plan to ensure that the 300 million Persons Living with a Rare Disease around the world have access to the care and support they need. It’s time to shift the paradigm on rare diseases and ensure that no one, anywhere in the world, is left behind in Universal Health Coverage. What about you? Why will you support the #Resolution4Rare?

Bluesky/Instagram:

5% of the world’s population will be diagnosed with a rare condition during their lifetime, yet rare diseases are often overlooked in health policies.

The #Resolution4Rare &  Global Action Plan are crucial to ensuring 300M+ people get the care they need. No one should be left behind in #UHC.

Editable Week 2 Message

You can access the template here to add your logo or translate the text to another language

Download the Week 2 (14 April) Message here:

Sample posts:

LinkedIn/Instagram:

Why support the #Resolution4Rare? Because we are all connected to someone who lives with a rare disease – whether a family member, friend, neighbor or coworker. Yet, for too long, rare diseases have been overlooked in global health policies, leaving over 300 million people worldwide without adequate support, diagnosis, or treatment.

That’s why the World Health Assembly (WHA) Resolution on Rare Diseases is so critical. By recognizing rare diseases as a global health priority, the #Resolution4Rare paves the way for stronger healthcare systems, increased research, and better access to life-saving treatments. It is a call for equity—ensuring that no one is left behind simply because their condition is considered rare.

Now is the time to act. Support the rare disease community by urging policymakers, healthcare leaders, and global institutions to support this resolution and commit to tangible actions that improve the lives of those affected. Together, we can drive change and create a future where people with rare diseases receive the care and recognition they need and deserve.

What about you? Why will you support the #Resolution4Rare?

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Bluesky:

Why support the #Resolution4Rare? Because rare diseases impact us all—family, friends, neighbors. Yet, 300M people worldwide lack proper diagnosis, treatment & support.

It’s time for equity & action.

Join us—urge leaders to make rare diseases a global health priority! #Resolution4Rare

Editable Week 1 Message

You can access the template here to add your logo or translate the text to another language

Download the Week 1 (7 April) Message here:

Sample posts:

LinkedIn:

Why do I support the #Resolution4Rare? Because rare conditions are not as rare as you might think. There are over 7,000 identified rare conditions, and 300 million persons living with a rare disease (PLWRD) around the world. While PLWRD are collectively not rare, they face unique challenges in accessing diagnosis, treatment and care. That is why rare diseases must be a global health priority. By supporting the WHA Resolution on Rare Diseases, you can help improve outcomes for PLWRD wherever they live.

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Bluesky/Instagram:

Why support #Resolution4Rare? Because rare diseases aren’t rare — 7,000+ conditions affect 300M people worldwide. PLWRD face unique challenges in diagnosis, treatment & care. Let’s make rare diseases a global health priority! #WHA #RareDisease