Solve-RD infographic on the patient journey to diagnosis

Solve-RD - solving the unsolved rare diseases is a research project funded by the European Commission, aiming to solve large numbers of rare diseases for which a molecular cause is not known yet.  To date, the Solve-RD Project is analysing 8,463 datasets (8,152 whole exome sequencing and 311 whole genome sequencing datasets) including datasets from 5,205 individuals from 4,862 families. The project has already solved 130 rare disease cases for which a molecular cause was not previously known.

Within the Solve-RD project, EURORDIS initiated the Community Engagement Task Force (CETF - a multi-stakeholder community of patients, scientists and clinicians to support the needs of undiagnosed and recently diagnosed patients and leave a legacy of a strengthened undiagnosed community.

The EURORDIS-led CETF has created an infographic setting out the patient journey to diagnosis. The infographic demonstrates the diagnostic odyssey many people experience on a daily basis and presents existing resources from CETF member organisations to support patients on this journey.

Click on the logos to read more information about organizations involved in Solve-RD:

The infographic is now also available in French, German, Dutch, Turkish, Czech, Spanish, Italian, Portuguese and Swedish:

German Dutch
Turkish French
Czech Spanish
Italian Portuguese
Swedish Bulgarian
Romanian Icelandic
Hungarian Slovak
Serbian  
 

We encourage you to share this diagram. If you would like to translate the diagram into your language please contact gulcin.gumus@eurordis.org.

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases