PIPHealth - Patient Intelligence Panel

PIPHealth - Patient Intelligence Panel

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Giving patients a voice through research. To sign up for Patient Intelligence Panel or find out more PIPHealth gives patients a voice through research.

Transthyretin amyloid cardiomyopathy (ATTR-CM) - Insights project 2025 05/12/2025

Excited to be working on a ATTR Amyloidosis website, which then will be translated in over 10 European languages so that more ATTR Amyloidosis patient can learn about it in their own local language. It’s essential that the website will be reviewed by people diagnosed with ATTR (hATTR or Wild type) before we publish and translate it. The review will be done by Teams meeting. Interested to help out? (We’ll pay £40/€45) Let us know or click here https://www.surveymonkey.com/r/5V3F952

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15/05/2024

•Kinderen met XLRP / Retinitis Pigmentosa (RP)•

Wij zijn op zoek naar ouders van kinderen met de diagnose XLRP / Retinitis Pigmentosa (RP) die mee willen werken aan een één-op-één interview via Teams. Door middel van het afnemen van interviews willen we specifieke behoeftes van deze groep kinderen in kaart brengen.

Het interview is volledig anoniem en duurt maximaal 1 uur. De vergoeding bedraagt € 35,- in de vorm van een cadeaubon. Wilt u meewerken? Aanmelden kan via deze link: https://nl.surveymonkey.com/r/L2XQZM3

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