Welcome to RareNext

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4 – 5 years

It takes on average four to five years for someone with a rare disease to receive the correct diagnosis worldwide.
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4.84 %

Only 4.84 percent of roughly 11k known rare disorders currently benefit from an orphan‑designated medicinal product globally.
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44 %

Lost productivity makes up forty‑four percent of the United States’ total rare‑disease economic burden, due to lower adult workforce participation.
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300 m

Around three hundred million people worldwide live with a rare disease, even though each individual condition affects only tiny populations.

View case studies

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View articles

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Porttitor orci cras in eget. Elementum urna venenatis molestie egestas. Ultricies consectetur massa lorem enim. Morbi donec orci, adipiscing diam. Lectus id quam ut mattis ac ut mi. Nec pharetra tempor pharetra, amet cursus duis.

Creating meaningful
connections in rare

Rare diseases are complex, frustrating and – for too many people – inequitable. The Rare Next Futures Report explores seven pressing questions, from delayed diagnosis to the promise of AI, and offers collaborative, data‑driven solutions that can transform care for the 300 million people living with a rare condition worldwide.

Health equity
Act so that progress benefits every geography and community, not just the well‑resourced few.
Uniting rare voices
Build focused coalitions of patient groups to amplify advocacy and drive meaningful change.
Managing the diagnostic odyssey
Cut the 4–5‑year search for answers and ease the emotional burden with transparent, patient‑centred conversations.
Innovation that fuels hope
Harness AI, gene & RNA editing, quantum computing and needle‑free tech to accelerate discovery – and daily life.
Meaningful evidence
Combine patient‑reported outcomes and real‑world data to inform access and value decisions.
Shared clinical endpoints
Align biomarkers and outcomes early to speed development, approval and reimbursement.
Empowering clinicians
Bridge the HCP knowledge gap with peer‑led education, AI‑enabled data tools and easy‑to‑find CME.
Collaborative momentum
Break down silos across borders, disciplines and stakeholders to close critical gaps in rare care.

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Contact

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