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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EURORDIS – Rare Diseases Europe ·
CAIRD – Congress on Advances in Inherited Retinal Diseases
The post CAIRD – Congress on Advances in Inherited Retinal Diseases appeared first on EURORDIS-Rare Diseases Europe.
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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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Cancer Research UK (Science & Patient Updates) · · Oncology
Could clearing ‘immune fog’ stop lung cancer?
Researchers have discovered how an immune cell may help lung cancer develop, which could lead to new ways of preventing the disease. The post Could clearing ‘immune fog’ stop lung cancer? appeared first on Cancer Research UK - Cancer News.
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National Organization for Rare Disorders (NORD) ·
CNBC’s Becky Quick to Moderate CEO Leadership Dialogue on the Next Decade of Rare Disease at the NORD Breakthrough Summit
BioMarin, Jazz Pharmaceuticals, and Otsuka CEOs to Join NORD CEO to Examine What it Takes to Turn Scientific Advancements into Patient Progress WASHINGTON, D.C. and NORWELL, Mass., October 6, 2026 … Continue reading "CNBC’s Becky Quick to Moderate CEO Leadership Dialogue on the Next Decade of Rare D...
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Cancer Research UK (Science & Patient Updates) · · Oncology
Circulating DNA pioneer wins early detection Impact Award
Fresh from his Impact Award announced at the Early Detection of Cancer Conference in Edinburgh, we chat to Professor Allen Chan... The post Circulating DNA pioneer wins early detection Impact Award appeared first on Cancer Research UK - Cancer News.
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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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Cancer Research UK (Science & Patient Updates) · · Oncology
A moment with Mariam: Meeting CRUK’s new Chief Clinician
As she begins her tenure as CRUK’s Chief Clinician, we caught up with Mariam Jamal-Hanjani... The post A moment with Mariam: Meeting CRUK’s new Chief Clinician appeared first on Cancer Research UK - Cancer News.
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Cancer Research UK (Science & Patient Updates) · · Oncology
Cancer Research UK appoints Professor Mariam Jamal-Hanjani as its new chief clinician
The post Cancer Research UK appoints Professor Mariam Jamal-Hanjani as its new chief clinician appeared first on Cancer Research UK - Cancer News.
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