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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.
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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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World Federation of Hemophilia (WFH) · · Hematology
WFH November webinars explore key areas of bleeding disorders care
This November, the World Federation of Hemophilia (WFH) will host four digital webinars which will address important topics for the global inherited bleeding disorders community. From adolescent care and rare bleeding disorders to women’s oral health and chronic synovitis, these sessions will bring...
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World Federation of Hemophilia (WFH) · · Hematology
Genetic technologies for hemophilia video series released
The World Federation of Hemophilia (WFH) is pleased to announce the release of a new four-part educational video series on genetic technologies for hemophilia. Designed for people with bleeding disorders, their families, and healthcare professionals, the series explains complex scientific concepts i...
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World Federation of Hemophilia (WFH) · · Hematology
World Hemophilia Day 2027: Every voice counts.
April 17, 2027 will be a day to celebrate World Hemophilia Day, and the solidarity of the global inherited bleeding disorders community. This year’s theme of “Every voice counts.” recognizes the successes that have come from the collective efforts of countless individuals and organizations collabora...
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Thalassaemia International Federation (TIF) · · Hematology
Thalassaemia Explained: What I Need to Know (2026)
Written for patients, families and caregivers, this new guide explains thalassaemia and its treatments in clear, accessible language, offering practical guidance for everyday life and helping readers take an informed, active role in their care.
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World Federation of Hemophilia (WFH) · · Hematology
How I was inspired: a SSMF scholar’s personal research project
When Yujie (Ruby) Zuo was awarded a Susan Skinner Memorial Fund (SSMF) scholarship at the WFH 2026 World Congress in Kuala Lumpur, Malaysia, it was the culmination of many years living with hemophilia A, and working to better understand her condition and support other women like her. As her work as...
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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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World Federation of Hemophilia (WFH) · · Hematology
Collaboration strengthens hemophilia care in Trinidad and Tobago
In Trinidad and Tobago, collaboration between the World Federation of Hemophilia (WFH), local people with bleeding disorders (PWBDs), families, healthcare teams, national organizations, and international partners is helping reshape access to treatment and care for people with inherited bleeding diso...
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World Federation of Hemophilia (WFH) · · Hematology
You can now register for CCS 2027!
New therapies, emerging evidence and evolving approaches are creating new possibilities in bleeding disorders care. Be part of the conversation at the WFH 2027 Comprehensive Care Summit (CCS) in Prague, Czechia, this April 14 to 16, 2027. More information on accommodations and travel will be availab...
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