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.
-
Rare Diseases International (RDI) ·
Read the June 2026 Newsletter from Rare Diseases International
The post Read the June 2026 Newsletter from Rare Diseases International appeared first on Rare Diseases International.
-
Global Alliance for Patient Access (GAfPA) ·
A New Option, A Bigger Opportunity: Cholesterol Management’s Place in Cardio-Kidney-Metabolic Strategy
This week the FDA approved a new oral PCSK9 inhibitor, the first in that class available as a once-daily pill rather than an injection, for adults with hypercholesterolemia. It joins a growing set of tools for managing LDL cholesterol, including statins, ezetimibe, injectable PCSK9 inhibitors, and o...
-
Global Allergy & Airways Patient Platform (GAAPP) ·
GAAPP Academy – Reflections on Continuity: Keeping the Legacy Alive
In this GAAPP Academy webinar, “Reflections on Continuity: Keeping the... The post GAAPP Academy – Reflections on Continuity: Keeping the Legacy Alive appeared first on Global Allergy & Airways Patient Platform.
-
EUPATI (European Patients' Academy on Therapeutic Innovation) ·
More About Our Team…Let’s Chat To…
Vitalii Luchinskii, EUPATI’s IT and Toolbox Coordinator. In this latest edition of showcasing our EUPATI Secretariat team, we sit down virtually with Vitalii Luchinskii and discuss his role and responsibilities as well as his working routine. Vitalii is the person behind the scenes keeping EUPATI’s...
-
EUPATI (European Patients' Academy on Therapeutic Innovation) ·
EUPATI at the European Parliament: Putting Patients at the Heart of Vaccination
On 25 June EUPATI was proud to participate in the European Parliament event “Prevention that Saves: EU Leadership and National Action on Vaccination”. We were delighted to contribute to Session 1: Turning Policy Ambition into Health Outcomes, moderated by Prof. Walter Ricciardi. Maria Dutarte, our E...
-
EUPATI (European Patients' Academy on Therapeutic Innovation) ·
Co-Creating Patient Involvement in IHI-GREG
On 7 May 2026, EUPATI and Novo Nordisk delivered an in-person workshop on patient involvement during the IHI-GREG General Assembly in Copenhagen. The session brought together consortium partners and members of the IHI-GREG Patient Advisory Group (PAG) to explore how meaningful patient involvement ca...
-
Global Genes (Rare Disease Advocacy) ·
Acting FDA commissioner pledges to prevent political interference in rare disease meeting
Global Genes was honored to be invited by the FDA to participate in a closed roundtable discussion […] The post Acting FDA commissioner pledges to prevent political interference in rare disease meeting appeared first on Global Genes.
-
Health Action International (HAI Europe) ·
Half of all clinical trials in Europe do not report results as required by law
A study published this week found that half of clinical trials in Europe did not have results available as required by law. Many pharma companies and universities are breaking a new law requiring the results of clinical trials of medicines to be rapidly made public. European regulators do not seem t...
Want to follow it? Tell us
Request a demo and mention PEC Pulse: we will let you know when it opens.