Public sources only
Every item links back to the organization that published it.
PEC Pulse
Follow what patient organizations are announcing
PEC Pulse is planned as a news stream that gathers public announcements from patient organizations, always with a link back to the original source.
Coming soon
These capabilities are planned. They are not available yet.
Short digests in plain language
Items summarized in Arabic, English and French.
Information, not medical advice
Pulse reports what organizations announce. It never gives medical advice.
Announcements from patient organizations
Because we care for your health, we gather for you the patient support news of the most credible societies.
Information only, not medical advice. Each announcement belongs to the organization that published it: follow the link to read it at its source.
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European Haemophilia Consortium (EHC) · · Hematology
European Haemophilia Consortium (EHC) launches Mental Health Toolkit for the bleeding disorders community
On World Mental Health Day 2026, the EHC launches a new resource to support mental health awareness and action across the bleeding disorders community. The post European Haemophilia Consortium (EHC) launches Mental Health Toolkit for the bleeding disorders community appeared first on European Haemop...
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EURORDIS – Rare Diseases Europe ·
Real4Reg Final Symposium
The post Real4Reg Final Symposium appeared first on EURORDIS-Rare Diseases Europe.
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EURORDIS – Rare Diseases Europe ·
X Jornada Nacional de Pacientes y Familiares de Enfermedades Autoinflamatorias
The post X Jornada Nacional de Pacientes y Familiares de Enfermedades Autoinflamatorias appeared first on EURORDIS-Rare Diseases Europe.
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EURORDIS – Rare Diseases Europe ·
La Nit de la Visió
The post La Nit de la Visió appeared first on EURORDIS-Rare Diseases Europe.
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EURORDIS – Rare Diseases Europe ·
CAIRD – Congress on Advances in Inherited Retinal Diseases
The post CAIRD – Congress on Advances in Inherited Retinal Diseases appeared first on EURORDIS-Rare Diseases Europe.
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Health Action International (HAI Europe) ·
Navigating Health Misinformation in a Digital Age
Earlier this year, we joined partners in launching the Engaging Citizens in Honest Opinion (ECHO) project. This timely initiative addresses misinformation and disinformation in the European Union across a wide range of sectors, including health, education and the media. Within ECHO, HAI focuses on t...
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Health Action International (HAI Europe) ·
Pandemic Architecture: Mapping challenges & opportunities
Last week, a group of experts from across civil society, academia, the healthcare sector and government met online for a workshop to discuss the global architecture for Pandemic Prevention, Preparedness and Response (PPPR). Happening during the latest rounds of negotiations on the final (and crucial...
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European Haemophilia Consortium (EHC) · · Hematology
New European Haemophilia Consortium (EHC) guide helps adults with bleeding disorders describe their pain to healthcare teams
To mark World Patient Safety Day 2026, the EHC is releasing a new guide, “I want to talk about my pain today!”, built on a simple principle: accurate pain assessment and patient-clinician communication are fundamental to getting the right care. The post New European Haemophilia Consortium (EHC) guid...
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