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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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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Global Alliance for Patient Access (GAfPA) ·
Calling for European Action on Blood Health
Blood is one of the body’s most vital organs, yet it remains one of the most overlooked in health policy. Through its Blood Health Initiative, the Global Alliance for Patient Access has long worked to change that. On World Patient Safety Day, GAfPA joined a broad coalition of patient organizations,...
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National Organization for Rare Disorders (NORD) ·
NORD Announces the 2026 Rare Impact Award Honorees Advancing Innovation, Research, and Advocacy for Rare Diseases
The National Organization for Rare Disorders (NORD®) is honoring a distinguished group of biopharma industry leaders, medical scientists, and patient advocates for their contributions to improving the lives of the … Continue reading "NORD Announces the 2026 Rare Impact Award Honorees Advancing Innov...
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National Organization for Rare Disorders (NORD) ·
NORD Rare Cancer Advocates Gather on Capitol Hill to Recognize Rare Cancer Day
Advocates Highlight Challenges Facing 1 in 4 Cancer Patients Diagnosed with a Rare Cancer WASHINGTON, D.C. and NORWELL, Mass., September 23, 2026 – Patients, caregivers, advocates, and clinicians joined the … Continue reading "NORD Rare Cancer Advocates Gather on Capitol Hill to Recognize Rare Cance...
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Global Allergy & Airways Patient Platform (GAAPP) ·
Let’s Talk Cough: A Landmark Initiative Giving Patients a Voice in Chronic Cough Research
GAAPP is proud to join forces with leading patient organizations... The post Let’s Talk Cough: A Landmark Initiative Giving Patients a Voice in Chronic Cough Research appeared first on Global Allergy & Airways Patient Platform.
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International Osteoporosis Foundation (IOF) ·
MAC AND CHEESE
MAC AND CHEESE iribeiro@iofbo… Wed, 09/23/2026 - 11:04 Subtitle BY LIONEL RIGOLET Type of meals Main Course Allergies Vegetarian Time 80 Serving 4 Calories 527 Calcium 630 Protein 23 Vitamin D 57 Recommended Daily intake of calcium 46 Pdf /sites/iofbonehealth/files/2026-09/Mac%20%26%20Cheese%20by%20...
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International Osteoporosis Foundation (IOF) ·
LE GRUYÈRE AOP STUFFED MEATBALLS
LE GRUYÈRE AOP STUFFED MEATBALLS iribeiro@iofbo… Wed, 09/23/2026 - 11:01 Subtitle IN TOMATO SAUCE Type of meals Main Course Allergies Lactose free Gluten free Time 210 Serving 4 Calories 885 Calcium 426 Protein 49 Vitamin D 98 Recommended Daily intake of calcium 31 Pdf /sites/iofbonehealth/files/202...
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International Osteoporosis Foundation (IOF) ·
LE GRUYÈRE AOP
LE GRUYÈRE AOP iribeiro@iofbo… Wed, 09/23/2026 - 10:57 Subtitle AUBERGINE ROLLS Type of meals Main Course Allergies Gluten free Vegetarian Time 80 Serving 4 Calories 580 Calcium 510 Protein 23 Vitamin D 0 Recommended Daily intake of calcium 37.5 Pdf /sites/iofbonehealth/files/2026-09/Le%20Gruyere%20...
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