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CATRDR
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Every Life Has Value. Every Donor Creates Legacy. Every Deserves Hopes.

Why This Matters

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Rare diseases affect over 400 million people worldwide, yet most lack a diagnosis or access to lifesaving therapies. These gaps are deepest in communities across Africa, South Asia, and diaspora populations in countries like the United Kingdom.

CATRDR — the Commonwealth Advanced Therapies and Rare Diseases Registry — is building the first ancestry-informed, regenerative medicine and rare disease platform for global communities. This hub shares insights, region-specific data, treatment pathways, and collaborative tools to bridge equity and access.

Regional Rare Disease Mapping

CATRDR Support:

Cultural silence around inherited illness, combined with limited clinical genetics services, means families often struggle in isolation. CATRDR is working with Somali healthcare providers, diaspora clinicians, and regional partners to build a culturally sensitive rare disease map. This effort will help identify inherited conditions common in Somali communities, including metabolic, neurological, and haematological disorders. Mapping rare diseases in Somalia is not only a scientific need—it is a moral imperative to restore dignity, data sovereignty, and access to future therapies for generations to come.

CATRDR Support:

Many families journey for years across clinics without answers, while children and adults alike remain excluded from lifesaving interventions. CATRDR is working to change that. By mapping rare diseases in Tanzania with a culturally respectful and data-driven approach, we aim to uncover the true prevalence and connect communities with global treatment pathways. Your support helps build a future where no Tanzanian faces a rare disease alone or in silence. We invite policymakers, medical professionals, and families to stand with us and strengthen this critical registry.

CATRDR Support:

With limited genetic services and no national registry, patients often endure years of misdiagnosis or medical abandonment. Children born with treatable metabolic or genetic conditions may never receive an accurate name for their illness. CATRDR’s rare disease mapping initiative in Zambia aims to change this reality. By collecting meaningful ancestry-based, clinical, and genomic data, we seek to build a future where early diagnosis and equitable treatment are possible. Your support helps give voice to those forgotten by the system and brings Zambia closer to a just, responsive healthcare model.

CATRDR Support:

Despite having a well-structured healthcare system, the island lacks a comprehensive approach to identifying and managing rare diseases—especially those inherited across ancestral lines. With intermarriage and island isolation influencing disease prevalence, CATRDR’s mapping efforts aim to fill knowledge gaps and connect Mauritian patients with global networks for diagnosis and support. By empowering local researchers and families, we can ensure that the voices of rare disease patients are heard—and that no one is left behind due to geography or genetic complexity.

CATRDR Support:

Families affected by inherited or unexplained conditions often face long journeys across clinics without answers or support. With limited local genomic data and diagnostic services, patients—especially those from indigenous or rural communities—are left behind. CATRDR is working to close this gap by supporting rare disease mapping in Botswana, grounded in respect for cultural identity, ancestry, and national health goals. By building this registry together, we can ensure that every Motswana living with a rare condition is recognised, supported, and included in future therapies and policy reforms.

CATRDR Support:

With thousands of endogamous communities and tribal populations, India presents one of the most complex rare disease landscapes globally. CATRDR recognises this immense diversity and is committed to working alongside local experts to build community-rooted, culturally respectful rare disease registries. From Kerala to Kashmir, mapping rare diseases in India is not only a scientific mission—it is a justice-driven campaign to ensure equitable access to life-changing therapies for all Indians, regardless of class, caste, or region.

CATRDR Support:

While home to world-class universities and genetic research institutions, many communities—particularly in rural, underserved, or historically marginalised areas—remain excluded from rare disease diagnosis and care. The legacy of inequality continues to impact access to genetic testing and early intervention. CATRDR’s rare disease mapping initiative in South Africa focuses on ensuring that representation in research leads to real-world inclusion in treatment. By working with families, clinicians, and civil society, we aim to uncover the genetic stories of South Africa’s diverse populations and ensure that no child or adult is left in diagnostic limbo. This is more than mapping—it is a step towards restorative justice in healthcare.

CATRDR Support:

Individuals from global majority backgrounds, especially those with African, Caribbean, South Asian, or mixed ancestry, remain grossly underrepresented in genetic databases and biobanks. This leads to diagnostic delays and exclusion from clinical trials and advanced therapies. CATRDR is committed to working with UK families, clinicians, and researchers to map rare diseases in underrepresented communities and close the equity gap. Our registry complements NHS Genomic Medicine initiatives by ensuring every life, regardless of background, is recognised and prioritised in the pursuit of precision healthcare.

CATRDR Support:

With a history of consanguinity influencing genetic inheritance patterns, many rare conditions are more common in the region—but remain underdiagnosed due to stigma, limited local data, and lack of widespread genetic screening. CATRDR aims to support local and regional efforts to map rare diseases by working alongside clinicians, families, and policymakers. Through respectful data collection and community education, we hope to build a more inclusive approach to rare disease care—ensuring that families across the Kingdom have access to early diagnosis and emerging therapies.

CATRDR Support:

The combination of tribal identity, family history, and limited genomic infrastructure creates an urgent need for structured rare disease mapping. CATRDR is committed to working with Omani medical experts and public health stakeholders to identify and document rare diseases with cultural sensitivity. Our goal is to enable a future where every Omani child and adult affected by a rare condition has access to precise, ethical, and affordable medical care grounded in both ancestral knowledge and modern science.

Supported Regenerative Therapies

CATRDR collaborates with accredited hospitals and donor networks to support access to:
  • Stem Cell Transplants (HSCT) — for blood and immune disorders
  • Cord Blood Transplants — essential for patients without sibling matches
  • Gene Therapies — for SMA, Thalassemia, SCID and select metabolic diseases
  • Tissue Engineering and Organoid Therapies — for neurodegenerative and rare organ diseases in development

All therapeutic pathways are reviewed under ethical, regulated, and region-specific safety guidelines.

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Success Stories
  • Tanzania: Teenager with Sickle Cell Disease received a curative transplant in India.
  • UK: British Pakistani child with Thalassemia matched via CATRDR’s donor registry.
  • Saudi Arabia: A young boy with SMA was linked to a European gene therapy trial.
  • Zimbabwe–London: A five-year-old child with Sickle Cell Anaemia received a life-saving cord blood transplant in the UK.

Other Rare Diseases to Know

These conditions are underreported, misunderstood, or delayed in diagnosis, particularly in diverse global populations:
  • Primary Immunodeficiencies (e.g., SCID, CVID) – recurrent infections from birth
  • Fabry Disease – nerve pain, kidney failure, heart complications
  • Hereditary Angioedema (HAE) – severe swelling with life-threatening airway risk
  • Ehlers-Danlos Syndrome – joint hypermobility, fragile skin, chronic pain
  • Wilson’s Disease – copper buildup in the brain/liver, psychiatric symptoms
  • Xeroderma Pigmentosum – UV hypersensitivity with early skin cancers
  • Niemann-Pick & Batten Diseases – rare childhood neurodegenerative disorders
  • Duchenne Muscular Dystrophy – progressive muscle weakening in young boys
  • Gaucher Disease – liver, bone, and spleen enlargement with genetic clustering.
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“Rare is not rare when we include everyone. Your ancestry, your access, your future — that’s our mission.”

— CATRDR & RCMR Global Team