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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Thalassaemia International Federation (TIF) · · Hematology
CONGENITAL DYSERYTHROPOIETIC ANAEMIA | New Study Highlights Endocrine Complications
Researchers reviewed the records of 12 patients aged 6–49 years. Nine had endocrine abnormalities, including low bone mineral density, diabetes, subclinical hypothyroidism, and elevated prolactin levels. Ten of the 12 …
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Thalassaemia International Federation (TIF) · · Hematology
TIF Annual General Assembly & Capacity Building Workshop 20–22 November 2026 | Athens, Greece
From 20 to 22 November 2026, the Thalassaemia International Federation (TIF) will convene its Annual General Assembly (AGA) and Capacity Building Workshop for Patients and Associations at the Titania Hotel …
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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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World Federation of Hemophilia (WFH) · · Hematology
Live now! GPAS 2026 full program
The WFH is pleased to announce that the full program for the Global Policy and Access Summit (GPAS) 2026 is now live! Join us virtually on October 20 to 21, 2026 to share strategies for sustaining and advancing bleeding disorders care in the fast-changing world, and to promote dialogue and knowledge...
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World Federation of Hemophilia (WFH) · · Hematology
Thank you: Etyang Francis’s inspirational letter
During his childhood, Etyang Francis suffered from frequent, debilitating knee joint bleeds and severe nosebleeds. At the time, his family had no knowledge of hemophilia; like many people in Uganda facing unexplained medical issues, they believed his condition was due to witchcraft. This misconcepti...
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World Federation of Hemophilia (WFH) · · Hematology
19th NTGT workshop marks 30 years of scientific innovation
This November, the World Federation of Hemophilia (WFH) will mark 30 years of scientific innovation with the 19th New Technology and Gene Therapy (NTGT) Workshop in Montreal, Canada. Experts from around the world will come to the city on November 12 to 13, 2026 to explore the latest developments in...
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Thalassaemia International Federation (TIF) · · Hematology
THE US THALASSAEMIA EXPERIENCE | A Landscape Analysis by TIF
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Thalassaemia International Federation (TIF) · · Hematology
THE MENA THALASSAEMIA EXPERIENCE | 30–31 October 2026
IMPORTANT UPDATE: Due to the ongoing situation in the Middle East, and with the safety and well-being of participants, faculty and partners as the highest priority, the Masterclass will now …
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