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
Bridging the Gap: Executive Summary of the EHC 2026 Round Table on Bleeding Disorders and Cardiovascular Care in Europe
In September 2026, the EHC organised a Round Table at the European Parliament in Brussels, hosted by MEP Aurelijus Veryga. The Executive Summary of the event is now available. The post Bridging the Gap: Executive Summary of the EHC 2026 Round Table on Bleeding Disorders and Cardiovascular Care in Eu...
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EURORDIS – Rare Diseases Europe ·
FH Europe Annual Network Meeting 2026
The post FH Europe Annual Network Meeting 2026 appeared first on EURORDIS-Rare Diseases Europe.
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EURORDIS – Rare Diseases Europe ·
FCS Awareness Day
The post FCS Awareness Day appeared first on EURORDIS-Rare Diseases Europe.
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EURORDIS – Rare Diseases Europe ·
Día Internacional de la Piel de Mariposa / EB Awareness Day
The post Día Internacional de la Piel de Mariposa / EB Awareness Day appeared first on EURORDIS-Rare Diseases Europe.
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EURORDIS – Rare Diseases Europe ·
Expert Dialogue on Cross-Border Healthcare
On 4 November, the European Parliament Intergroup on Cancer and Rare Diseases and Giorgos Georgiou MEP, will convene an expert dialogue on how Europe’s cross-border healthcare framework can better meet the needs of people living with cancer and rare diseases. EURORDIS – Rare Diseases Europe, the Eur...
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EURORDIS – Rare Diseases Europe ·
Europe’s rare disease community sets out Blueprint for coordinated EU action
Our community’s proposals for the structure, priorities and delivery of a future EU Action Plan on Rare Diseases The post Europe’s rare disease community sets out Blueprint for coordinated EU action appeared first on EURORDIS-Rare Diseases Europe.
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Health Action International (HAI Europe) ·
Help us Stand up for the Right to Health
For 45 years, Health Action International (HAI) has been at the forefront of the global health equity movement. Our programmes have a positive impact on the lives of people in 36 countries across four continents, and our impact extends even further through our network of partner organisations across...
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EURORDIS – Rare Diseases Europe ·
Koolen-De Vries Syndrome Foundation Scientific and Patient Advocacy Summit
The post Koolen-De Vries Syndrome Foundation Scientific and Patient Advocacy Summit appeared first on EURORDIS-Rare Diseases Europe.
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