5.1 million people across Europe are living with a rare cancer

Eurordis, Rare Diseases Europe
The Voice of Rare Disease Patients in Europe

New European recommendations on rare cancers

EURORDIS meets with EU Commissioner for<br />
                      Health & Food Safety to discuss Europe's<br />
                      Beating Cancer Plan

There are an estimated 5.1 million people living with a rare cancer across Europe and 200 types of rare cancers. The rare disease community and the rare cancer community are sometimes regarded as two different worlds. But this is far from the reality, as patients and their families share the same burden and face similar challenges created by the rarity of their conditions.

Based on the work done through the European Joint Action on Rare Cancers (2016 – 2019), the recently published Rare Cancer Agenda 2030 book sets out 10 recommendations to improve rare cancer care through effective policies.

RareConnectRARECONNECT

New RareConnect patient community for RUNX1-familial platelet disorder (RUNX1-FPD)

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EURORDIS TVLIVING WITH A RARE DISEASE

28 passionate youth advocates have joined the Rare2030 Foresight Study – read their stories!

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EURORDIS TVEURORDIS TV

Watch European Commissioner for Equality Helena Dalli's recent speech at the European Conference on Rare Diseases & Orphan Products.

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OPEN ACADEMYOPEN ACADEMY

Learn about the EURORDIS Digital School on Social & Digital Media, a fully online, free programme for patient advocates! 

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OPEN ACADEMYRARE DISEASES INTERNATIONAL

Presentations from the recent RDI global meeting are now available

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RARE DISEASE DAY 2016RARE DISEASE DAY 2020

World landmarks shined a light for Rare Disease Day 2020 – inspiration for your Rare Disease Day 2021 planning?!

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EUROPEAN CONFERENCE ON RARE DISEASES &<br />
                    ORPHAN PRODUCTSEUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS

New preferential rates to access on-demand recordings of all 29 conference sessions! 

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EUROPEAN CONFERENCE ON RARE DISEASES &<br />
                    ORPHAN PRODUCTSEURORDIS BLACK PEARL AWARDS

Nominate your rare disease star for one of the 13 EURORDIS Black Pearl Awards 2021!

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EUROPEAN CONFERENCE ON RARE DISEASES &<br />
                    ORPHAN PRODUCTSGET INVOLVED

Use the new EURORDIS call to action for policy makers on how to protect people living with a rare disease post confinement to advocate in your country

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OTHER RARE DISEASE NEWSOTHER RARE DISEASE NEWS

Attend the Patient Engagement Open Forum series of virtual events on patient engagement in medicines R&D.

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PATIENTS ADVANCING RESEARCH PATIENTS ADVANCING RESEARCH

New Solve-RD infographic & poster illustrating the rare disease diagnostic odyssey

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EURORDIS EVENTSEURORDIS EVENTS

Register for tomorrow's webinar on how to build a data strategy for the European Reference Networks

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EVENTSINTERNATIONAL

New World Economic Forum Precision Medicine Vision Statement

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This publication (or activity) has been funded with support from the European Union's Health Programme. This material only reflects the views of the author, and funders cannot be held responsible for any use which may be made of the information contained herein.

afmtelethonHealth Programme of the European Union

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