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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National Organization for Rare Disorders (NORD) ·
Choosing Hope Without Certainty: Sarah’s Rare Cancer Story
NORD is proud to share this rare cancer patient story in recognition of Rare Cancer Day. Learn more about Rare Cancer Day. By Sarah S. from Maryland The Surgery That … Continue reading "Choosing Hope Without Certainty: Sarah’s Rare Cancer Story"
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Global Allergy & Airways Patient Platform (GAAPP) ·
World Urticaria Day 2026
World Urticaria Day, an annual event dedicated to raising awareness... The post World Urticaria Day 2026 appeared first on Global Allergy & Airways Patient Platform.
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Rare Diseases International (RDI) ·
Read the July-August 2026 Newsletter from Rare Diseases International
The post Read the July-August 2026 Newsletter from Rare Diseases International appeared first on Rare Diseases International.
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Global Allergy & Airways Patient Platform (GAAPP) ·
World Lung Day 2026
World Lung Day 2026 A Lifetime of Lung Health On... The post World Lung Day 2026 appeared first on Global Allergy & Airways Patient Platform.
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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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Global Genes (Rare Disease Advocacy) ·
Big News for RARE-X and Rare Disease Families: Citizen Health Partnership
Dear Global Genes Community, Today, I’m thrilled to share an exciting new chapter for RARE-X and for […] The post Big News for RARE-X and Rare Disease Families: Citizen Health Partnership appeared first on Global Genes.
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National Organization for Rare Disorders (NORD) ·
NORD and Rosenau Family Research Foundation Launch Rare Research Launchpad to Introduce Students to Careers in Rare Disease Research
Free, online learning series and career exploration toolkit introduce aspiring scientists to rare disease research through real-world case studies NORWELL, Mass., Sept. 15, 2026 — The National Organization for Rare … Continue reading "NORD and Rosenau Family Research Foundation Launch Rare Research...
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Thalassaemia International Federation (TIF) · · Hematology
Efficacy and Safety οf Mitapivat in Adults with Transfusion-Dependent Α-Thalassaemia or Β-Thalassaemia (ENERGIZE-T): A Double-Blind, Randomised, Multicentre, Placebo-Controlled, Phase 3 Trial
Abstract Background: The absence of disease-modifying therapies for patients with α-thalassaemia and oral disease-modifying therapies for patients with β-thalassaemia has been a substantial unmet need in these patients. We assessed the …
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