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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National Organization for Rare Disorders (NORD) ·
NORD and Amgen Launch Learning Collaborative to Improve Rare Disease Diagnosis and Care
New Initiative Will Bring Together NORD® Rare Disease Centers of Excellence to Address Challenges in Two Rare Autoimmune Diseases and Develop Approaches that Could Benefit Other Rare Disease Communities WASHINGTON, … Continue reading "NORD and Amgen Launch Learning Collaborative to Improve Rare Dise...
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Cancer Research UK (Science & Patient Updates) · · Oncology
The ALBORADA Trust donates £9m to help develop the next generation of cancer research leaders
The ALBORADA Trust has committed £9m to fund a new cohort of Career Development Fellows and help develop the next generation of cancer research leaders. The post The ALBORADA Trust donates £9m to help develop the next generation of cancer research leaders appeared first on Cancer Research UK - Cance...
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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 Heart Federation (WHF News) · · Heart and stroke
Ensuring Equitable and Affordable Access to Essential Cardiovascular Medicines in the Eastern Mediterranean Region
This statement was submitted in written form under Agenda Item 5(e) – Progress Report on the Regional Strategy to Improve Access to Medicines and Vaccines in the Eastern Mediterranean Region 2020-2030 – at the Seventy-Third session of the WHO Regional Committee for the Eastern Mediterranean. Honoura...
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World Heart Federation (WHF News) · · Heart and stroke
Investing in Health: Financing Cardiovascular Health for All
This statement was submitted in written form under Agenda Item 6(a) – Advancing Health Financing for Stronger Financial Protection in the Eastern Mediterranean Region: Pathways to Equity and Resilience – at the Seventy-Third session of the WHO Regional Committee for the Eastern Mediterranean. Honour...
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World Heart Federation (WHF News) · · Heart and stroke
Leaving No One Behind: Prioritizing NCDs in Health Emergencies
This statement was delivered by Dr. Taskeen Khan, WHF Advocacy Committee representative for EMRO, under Agenda Item 5(b) – Progress Report on Health Issues Facing Populations Affected by Disasters and Emergencies, Including Implementation of the International Health Regulations (2005) – at the Seven...
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Global Allergy & Airways Patient Platform (GAAPP) ·
‘Food Should Not Hurt’: Global Patient Alliance Launches EoE Patient Care Path Campaign on World EoE Day
The Global Allergy and Airways Patient Platform (GAAPP), together with... The post ‘Food Should Not Hurt’: Global Patient Alliance Launches EoE Patient Care Path Campaign on World EoE Day appeared first on Global Allergy & Airways Patient Platform.
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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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