Caring for someone with any chronic health condition is an experience that is hard to relate to unless you’re going through it. Resources and support for caregivers are often hard to come by, friends and family don’t often understand, and treatment can be…
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Opportunity

There are more than 7,000 rare diseases registered with the National Organization for Rare Disorders and while each is unique, there are many commonalities that unite rare condition patients, families, caregivers and supporters. In the spirit of raising awareness of rare conditions, we…
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Applying for disability wasn’t an easy decision for Erica Carrasco, the migraine blogger behind Achy Smile. She’d been a go-getter her whole life, but had suffered from increasingly severe headaches as an adult that eventually derailed her career. There was nothing left to…
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Pontocellebellar Hypoplasia Type 1B: A Rare Genetic Disorder Can’t Stop This Family

Margaret Miller knew early on that something was off about her redheaded baby girl, Gwen. As a one-month-old, she still wasn’t making eye contact. Underweight at birth but seemingly healthy at first, Gwen continued to miss milestones as she got older. She had…
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6 Things You Should Know About Life with Hereditary Angioedema (HAE)

We deliver new health stories each week! –>   Imagine visiting Yankee Stadium and being selected and singled out of the entire crowd. Being born with Hereditary angioedema (or HAE) is a similarly rare event. It’s so rare, in fact, that many doctors aren’t…
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Rare disease

Q&A: Outlifting Addison’s Disease Tyler Brown is a 28-year-old biomedical engineering student who lives in Columbia, Missouri. When he isn’t busy taking a full load of classes and conducting research, you’ll find him enjoying walks with his wife, lifting weights, reading philosophy, watching…
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