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

English German
Dutch Turkish
French Czech
Spanish Italian
Portuguese Swedish

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

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases