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Latest News about patient advocacy
Recent news which mentions patient advocacy
Patient Advocacy at Alkermes
December 06, 2022
Tickers
ALKS
Tags
patient advocacy
Research, Reports & Publications
Alkermes
From
3BL Media: Corporate Social Responsibility, Energy and Health News
Timothy Syndrome Alliance & Pulse Infoframe collaborate on registry for rare CACNA1C-related disorders
March 24, 2022
Tickers
RWD
RWE
Tags
Real World Evidence
Cancer
CACNA1C
From
PRUnderground
The Myrovlytis Trust Leverages Pulse Infoframe’s Platform to Study Birt-Hogg-Dubé Syndrome
February 17, 2022
Tickers
PRO
RWD
RWE
Tags
patient reported outcomes
Healthcare
Myrovlytis Trust
From
PRUnderground
Ensuring No Duplicates: Implementing Pulse Infoframe’s GUID Model to Transfer and Link Patient Data from Study to Registry for Rare Disease
November 23, 2021
Tickers
RWD
RWE
Tags
GDPR
LouLou Foundation
no duplication
From
PRUnderground
Alport Syndrome Foundation Joins Pulse Infoframe’s healthie™ Kidney Disease Patient Registry
September 14, 2021
Tickers
RWD
RWE
Tags
RWE
RWD
Patient Registries
From
PRUnderground
PIP-UK to Celebrate Poland Syndrome Community Register Project at Annual Family Conference
August 12, 2021
Tickers
RWD
RWE
Tags
Healthcare
patient advocacy
rare disease platform
From
PRUnderground
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