Could Gene Editing Help with Bainbridge-Ropers Syndrome and Other Rare Diseases?
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Could Gene Editing Help with Bainbridge-Ropers Syndrome and Other Rare Diseases?

It doesn’t seem possible to have a conversation these days without it devolving into some sort of partisan shouting match will little hope of resolution. Issues that we might think…

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Caution! Is Lyme Disease Lurking Near You?
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Caution! Is Lyme Disease Lurking Near You?

Lately, I've been thinking the three B’s of burgers, beaches, and cold beverages—my to-do list at the start of warmer weather. Along with outdoor fun, though, health and science experts…

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Why This Mom Chose “Bleeder Moms” Over Blood Relatives for Inspiration
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Why This Mom Chose “Bleeder Moms” Over Blood Relatives for Inspiration

I’ve had one hellofa tough day, but stopped abruptly with an attitude shift to feel inspired after reading an uplifting article which I know will inspire tons of moms in…

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It’s Here: Patients with Hemophilia are Increasingly Demanding Improved Treatments and It’s Working!
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It’s Here: Patients with Hemophilia are Increasingly Demanding Improved Treatments and It’s Working!

All I can say is: "No $%@#, Sherlock" when I read articles like some of the ones I’ve read recently about the status of hemophilia A and hemophilia B treatments.…

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Hemochromatosis – When the Body Can’t Get the Iron Out
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Hemochromatosis – When the Body Can’t Get the Iron Out

Most of us know that not having enough iron in the blood results in disorders like anemia, fatigue, low energy… I first became aware of “iron-poor blood,” or anemia, when…

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You’ll Feel All the Feels for TSC Parenting Decisions
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You’ll Feel All the Feels for TSC Parenting Decisions

Some people can manage tuberous sclerosis complex (TSC) with their doctors for years using a watch-and-wait approach until the last and best option—surgery—becomes necessity. By using the watch-and-wait method, a…

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People with Tuberous Sclerosis Complex May Have New Hope
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People with Tuberous Sclerosis Complex May Have New Hope

Every year, actually every day, the FDA and similar organizations for other countries approve new medicines. Innumerable pharmaceutical companies work tirelessly for years to research, develop, test, distribute, and market…

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These Grandparents Swing with Shire to Ignite Inspiration for Hemophilia!
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These Grandparents Swing with Shire to Ignite Inspiration for Hemophilia!

The Hemophilia Alliance of Maine recently co-sponsored a special event with Shire Pharmaceuticals for grandparents to join together for inspiration. The event was held on April 22nd in Maine. I…

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Baheti: Running the Boston Marathon While Living with Stargardt’s Disease
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Baheti: Running the Boston Marathon While Living with Stargardt’s Disease

About four years ago, Sagar Baheti found out he had an eye condition called Stargardt disease. Initially, he was not alarmed by the small symptoms that indicated Stargardt. He did…

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New Study May Shed Light on Possible Neurodegenerative Disease Treatment Understanding
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New Study May Shed Light on Possible Neurodegenerative Disease Treatment Understanding

A study published in April has found a link between neurological birth defects in infants and several neurodegenerative diseases, which may help understanding and treating diseases such as Alzheimer's, Parkinson's…

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How to Relieve Stress by Joining with Other Women in the Hemophilia Community
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How to Relieve Stress by Joining with Other Women in the Hemophilia Community

On Saturday, April 29, 2017, a special event took place to honor women in the hemophilia community living in Idaho. Way to go, Idaho Chapter of the National Hemophilia Foundation! How…

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Have you heard? Mark Your Calendar for this Ovarian Cancer Support Event
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Have you heard? Mark Your Calendar for this Ovarian Cancer Support Event

June is hectic, with all those weddings and graduations. July is loud—firecrackers, political conventions, family reunions—and the humidity is stifling. But August, dear sweet lovely August? It might just be…

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