THE CRISIS

The Invisible Billions Why This Cannot Wait

๐Ÿ‡น๐Ÿ‡ฟ Tanzania โ€“ Pemba Island

A mother travels by boat every two weeks for her 8-year-old son who cannot walk properly. Every hospital gives a different guess. There is no genetic testing. There is no registry. He is invisible to global medical systems.

๐Ÿ‡น๐Ÿ‡ฟ Zanzibar

A girl suffering from repeated seizures is labelled "possessed" by some, "undiagnosed" by others. Her genetic variant is not in global datasets โ€” so results come back as VUS: Variant of Unknown Significance.

๐Ÿ‡ฎ๐Ÿ‡ฉ Indonesia โ€“ Central Java

A boy with a treatable bleeding disorder receives incomplete reports because his Javanese ancestry is not represented in global reference genomes. His condition has a cure โ€” but not for him.

๐Ÿ‡ฎ๐Ÿ‡ณ India โ€“ Multiple Cities

Families travel across the country for answers. A child with a rare metabolic disorder is misdiagnosed three times. Genetic labs say: "Your variant is not found in global databases." Because those databases were not built for her.

๐Ÿ‡ฌ๐Ÿ‡ง United Kingdom โ€“ Diaspora Communities

South Asian and African families suffer disproportionately from undiagnosed rare disorders. AI diagnostic tools are unreliable for them. Clinical trial criteria exclude them. They are British โ€” but their genes are strangers to the system.

๐Ÿ‡ฒ๐Ÿ‡ฝ Mexico โ€“ Indigenous Communities

Rare diseases in Mixtec, Maya, Otomรญ and other Indigenous groups remain undocumented. Children present with rare syndromes โ€” but zero global frameworks exist to diagnose them.

THE TRUTH

If You Are Not in the Data, You Are Not in the Cure

Modern medicine โ€” including gene therapy, stem-cell therapy, precision diagnostics, longevity science, and AI-driven healthcare โ€” is built on data.

Yet more than 80% of global genomic data comes from European-ancestry populations, while 85% of the world belongs to completely different ancestries.

Why Rare Disease Mapping Is Ancestral Justice

We Cannot Fix What We Do Not Measure

Rare diseases are strongly linked to:

Ancestry
Community Structures
Migration Patterns
Marriage Traditions
Unique Genetic Bottlenecks
Cultural Histories

Yet most of these patterns have never been recorded for Africa, South Asia, Latin America, Southeast Asia, the Middle East, Indigenous Nations or diaspora communities.

Mapping rare diseases in these populations is not a luxury โ€” it is ancestral justice.

It ensures that:

  • A child in Dar es Salaam has the same chance of diagnosis as a child in Paris.
  • A family in Jakarta receives answers, not confusion.
  • Indigenous children in Mexico are no longer invisible.
  • Diaspora families in London or Toronto finally see themselves in medical datasets.
  • Indiaโ€™s 1.4 billion people are accurately represented in precision medicine.
Ancestral Justice

The Longevity Gap

A Dangerous Future

Longevity and geroscience promise rejuvenation therapies, AI-ageing models, epigenetic clocks, early detection of ageing diseases, and healthspan extension.

But these tools fail when ancestry data is missing.

Without mapping rare diseases โ€” the foundation of genetic equity โ€” the Global Majority will be:

  • -- mis-aged
  • -- misdiagnosed
  • -- misclassified
  • -- mis-prioritised

A world where the Global North lives longer while the Global Majority is excluded from innovations is unacceptable.

What CATRDR Is Building

The First Global-Majority Rare Disease & Ancestry Registry

1

Map Rare Diseases

Documenting rare and chronic diseases in underrepresented communities worldwide to reveal hidden patterns.

2

Build Ancestry Datasets

Creating the world's first ancestry-specific health datasets for precision medicine and regenerative research.

3

Connect Stakeholders

Bridging researchers, clinicians, governments, families, and biotech to accelerate discovery and access.

4

Create Therapy Pathways

Designing equitable clinical pathways to gene therapy, stem-cell treatments, and advanced care for all ancestries.

5

Ensure Global Inclusion

Guaranteeing the Global Majority โ€” African, Asian, Indigenous, and mixed-ancestry populations โ€” belong in the future of medicine.

6

Support Longevity Science

Advancing geroscience and human longevity research with inclusive, ancestry-aware models for universal benefit.

Your Story Matters

Why Register with CATRDR?

Your story. Your ancestry. Your right to be seen.
Whether you are a patient, parent, clinician, researcher, or advocate โ€” you belong here.

Patient & Family Registration

  • Rare disease or suspected rare disease
  • Undiagnosed conditions
  • Genetic disorders
  • Family clusters of unexplained illnesses
  • Communities with shared ancestry patterns
Register as Patient / Family

Clinician / Researcher Registration

  • Doctors & Geneticists
  • NGOs & Public health officials
  • Academics & Hospitals
  • Patient advocacy groups
Register as Professional

Global Voices

Real Stories That Fuel Our Mission

These voices guide our mission.

What Must Happen Now

A Global Call to Action

1

Map rare diseases in the Global Majority

2

Build inclusive ancestry datasets

3

Integrate mapping with advanced therapy pathways

4

Train local clinicians to recognise rare diseases

5

Include Africa, Asia, LATAM, and Indigenous nations in longevity science

Every registration.
Every family.
Every clinician.
Every dataset.
Every community.
Every story.


Brings us closer to a world where
medicine belongs to everyone.

These Are the Stories That Created CATRDR

Every child lost because they were never in the data โ€” is why we exist.

A Match That Never Came

East Africa โ€ข Age 9

He loved football. Dreamed of flying planes.

Then came leukemia. Aggressive, but treatable โ€” if a stem-cell match existed.

โ€œMama, when I get better, can I go back to school?โ€

They searched everywhere. Local. National. Global.

No match. Because his ancestry was never mapped.

He died holding his motherโ€™s hand โ€” not because medicine failed, but because the world never included him.

The Light That Went Out Too Soon

East Africa โ€ข Age 5

In a small district hospital, a five-year-old fought a disease that had a cure.

His parents prayed. Doctors searched. Communities rallied.

But no donor registry existed for his people. No genetic map. No cord blood bank.

The match never came.

By the time help arrived โ€” it was too late.

He became one of thousands lost โ€” not to medicine, but to scientific invisibility.

THIS IS WHY CATRDR WAS BORN

CATRDR is not just a registry.
It is a rescue mission for billions.

Map the Global Majority

Build donor registries where none exist

Enable stem-cell & gene therapy access

Preserve cord blood in underserved regions

End preventable deaths from lack of matching

Give every ancestry a future

These were two children.
There will be millions more โ€” unless we act now.

Our Team

RARE IS NOT RARE
WHEN YOU INCLUDE EVERYONE.

The Global Majority deserves to be seen, mapped, diagnosed.
No community left behind. No ancestry invisible.

No rare disease patient should be left behind.

Trusted & Supported By

NDI
Snap
Stem
Ecacha
Connect
Regen
Heal