THIS WEEKEND: The Twin Run – Supporting High Risk Multiple Birth Parents And Twin Research
Photo courtesy of TAPS Support

THIS WEEKEND: The Twin Run – Supporting High Risk Multiple Birth Parents And Twin Research

This weekend during the Leiden Marathon, more than 30 parents, children, doctors, researchers and members of the public will run to raise money for the Well Bee Study.  This important…

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Broadening Perspectives and Changing Conventional Approaches – How Patient Groups Can Help Medical Teams.
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Broadening Perspectives and Changing Conventional Approaches – How Patient Groups Can Help Medical Teams.

In an earlier article, I've spoken about the power of Google and how it can benefit both patients and medical providers.  Through the power of the internet, advocates can help…

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What Is The Best Treatment For Twin Anemia Polycythemia Sequence? A Look At The TAPS Trial

In 2006, a new, rare disease affecting monochorionic twins was identified and named. Twin Anemia Polycythemia Sequence (TAPS) changed the perception of the complications of monochorionic twins. It started redefining…

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Creating Compassionate, Respected Online Rare Disease Communities: 7 Tips For Success
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Creating Compassionate, Respected Online Rare Disease Communities: 7 Tips For Success

In a previous article, I talked about the importance of patient-led advocacy groups and how they can positively impact how a rare diagnosis is received and understood by patients.  Do…

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