Tag Archives: patient advocates

The International Myeloma Foundation Pioneers Myeloma Awareness Month

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Years ago, after much frustration over the lack of understanding and awareness of multiple myeloma, the International Myeloma Foundation (IMF) declared March as “Myeloma Awareness Month” and has grown its program into a multifaceted campaign. This year’s program included a kickoff live event, free teleconference, new website, social media, local proclamations, and “Myeloma Awareness Month” kits for the more than 150 IMF support groups across the country. At the start of the month, IMF launched Read More >

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Rare Disease Day 2014: Joining Together for Better Care

Hans Schikan of Prosensa

There are more than 6,000 different rare diseases affecting over 60 million people across Europe and North America, alone, and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone. As the world marks Rare Disease Day on February Read More >

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Involving Patients in the Research Process

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According to the National Psoriasis Foundation, as many as 7.5 million Americans live with psoriasis, making it the most common autoimmune disease in the country. More than just a skin condition, psoriasis puts people at increased risk for other serious diseases such as heart disease, diabetes and depression. Up to 30 percent of people with psoriasis develop psoriatic arthritis, an inflammatory joint disease. A complex disease with a genetic component, psoriasis is not contagious. While Read More >

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National Patient Advocate Foundation: Cancer Patients are Being Left Behind

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Roll Call published a commentary today by Nancy Davenport-Ennis of the National Patient Advocate Foundation on the effects of the sequester on cancer care. The op ed states that these ‘cuts are shown to directly impact patients through higher copayments, longer travel times and increased travel expenses, visits to multiple providers and locations for care and services, and delays seeking treatment even as cancer progresses.’  Despite these facts, some have called for even deeper cuts Read More >

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Psoriasis Patients Flock to Social Media for Practical Info

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About eight in 10 psoriasis patients who use health care social networks say they do so primarily to learn how others manage their disease, and get practical tips and advice they couldn’t find elsewhere, according to a survey conducted by the National Psoriasis Foundation, Manhattan Research and Inspire, a company that builds and manages online patient communities. The millions of people with psoriasis, including the one million visitors to TalkPsoriasis in 2012, are not alone Read More >

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