Understanding HAE this hae day :-)

 In Advocacy & Awareness, Community, Fabry Disease, hae day :-), HAE Global Conference, HAE survey, HAEi, Hereditary Angioedema

Today, May 16, 2016, ishae day 🙂. This is a Global effort fromHAEi, a patient group dedicated to raising awareness of hereditary angioedema (HAE). The goal? Start a conversation that ensures better care, and earlier, more accurate diagnosis for people living with the condition.

There’s been progress in both treatment and support in recent years, but there is so much more we can do and it should be driven by an honest conversation with the people most impacted. That’s why onhae day 🙂 2016, Shire is initiating a Global HAE survey to better understand the psychosocial impact the disease has on the daily lives of patients and caregivers. Shire plans to use the results to inform the development of patient-centered tools and programs. For more information visit thewww.menothae.com website. HAEi supports this Shire initiative as well as all bona fide research directed at improving the lives of patients.

All of this work is being inspired by real patient stories, such as those from Katherine and Jørn. You can read their stories by clicking on the links below.

If you are attending the HAE Global Conference in Madrid, check out the Shire booth to record your Message of Hope and inspire people living with HAE with your story.

The post Understanding HAE this hae day 🙂 appeared first on Rare2Aware.

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