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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
Vincent from Uganda shares heartwarming story
In 2017, Vincent Komakech went to Lacor Hospital in Gulu with a severely swollen and painful knee. There, Agnes Kisakye, Executive Secretary of the Haemophilia Foundation of Uganda, realized that his clinical presentation was highly indicative of a bleeding disorder. She flagged the case to the phys...
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Thalassaemia International Federation (TIF) · · Hematology
Guidelines for the Emergency Management of Thalassaemia & Sickle Cell Disease – Second Edition (2026)
This updated guide provides healthcare professionals with a practical framework to recognise, assess, and manage urgent clinical situations in thalassaemia and sickle cell disease, ensuring timely initial care and clear escalation to specialists.
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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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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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Thalassaemia International Federation (TIF) · · Hematology
Delayed Recognition and Significant Morbidity in Adults with Non-Transfusion-Dependent Thalassemia
Abstract: Non-transfusion-dependent thalassemia (NTDT) is characterized by variable degrees of anemia, ineffective erythropoiesis, and iron overload, with a heightened risk of age-related complications. However, the clinical profiles of patients who …
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Thalassaemia International Federation (TIF) · · Hematology
Global Burden of Thalassemia by Socio-Demographic Index, 1990–2023: Trends, Disparities, and Future Implications
Thalassemia imposes a substantial and unequal global health burden, yet its temporal evolution stratified by sociodemographic development remains incompletely characterized using the most recent Global Burden of Disease (GBD) data. …
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Thalassaemia International Federation (TIF) · · Hematology
Ramathibodi Hospital, Mahidol University, Thailand (copy)
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European Haemophilia Consortium (EHC) · · Hematology
EHC is recruiting a Public Policy Intern for its Youth Fellowship Programme
The position, open to members of EHC National Member Organisations, is a full-time, paid internship of up to six months, combining work at the EHC office in Brussels and teleworking. The post EHC is recruiting a Public Policy Intern for its Youth Fellowship Programme appeared first on European Haemo...
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