Evelyn Leigh Evelyn Leigh

Adaptive Clothing: Dress for Less Stress

Adaptive clothing is clothing created to solve problems. Makers of adaptive clothing specialize in apparel, footwear, and accessories designed to make life easier for those with mobility issues and other special health needs. All aim to improve comfort and accessibility, promote independence and dignity, and make wearers look good and feel good.

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Craig Delarge Craig Delarge

Understanding Ambiguous Loss: Navigating Uncertainty in Rare Diseases

Ambiguous Loss is unique in that people facing this kind of loss are denied traditional closure rituals and acknowledgements, like memorials and respite periods, as well as typical social support and bereaved status. They are expected to carry on as usual, and may be stigmatized when they do not.

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Evelyn Leigh Evelyn Leigh

Women Who Broke Barriers in Rare Disease

From trailblazing researchers to game-changing public health advocates, women in medicine historically faced marginalization due to their gender, and, in some cases, their race. Nonetheless, they changed the playbook for the physicians who would follow them, as well as for the patients who would benefit from their discoveries in the future.

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Evelyn Leigh Evelyn Leigh

The Need for Clinical Studies in Rare Disease

Here’s a staggering statistic: only 5 percent of rare diseases have approved treatments. But that doesn’t mean there isn’t extensive work and research being done to find therapies, procedures, and eventually, cures for these conditions.

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Tali Wohlgelernter Tali Wohlgelernter

Tali's Story: Struggling with Epilepsy and Dravet Syndrome

On September 14, 2018 my healthy seven-month-old baby had her first seizure. It was scary. Really, really scary. It was hard to believe that this was really happening to us. After a lot of tests and tears, it became clear that this was not a one-time seizure.

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