Crowd-Source Funding Helps Man with Hepatic Porphyria Finally Receive a Diagnosis and Treatment
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Crowd-Source Funding Helps Man with Hepatic Porphyria Finally Receive a Diagnosis and Treatment

For people who don't live with chronic painful conditions, such as hepatic porphyria, it's hard to imagine the type of intense pain Colin McEwen was in -- both physically and…

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One Million Dollar Payday to be Rewarded for IPF Innovation
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One Million Dollar Payday to be Rewarded for IPF Innovation

A wealthy do-gooder is championing Idiopathic Pulmonary Fibrosis (IPF). No, it's not Tony Stark (a.k.a. Ironman). But there is a mega-force super power uniting global innovators, researchers, and healthcare entrepreneurs…

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Support Groups Need Support, Too! Check Out This Funding Source for Idiopathic Pulmonary Fibrosis Groups
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Support Groups Need Support, Too! Check Out This Funding Source for Idiopathic Pulmonary Fibrosis Groups

For the estimated 100,000 to 200,000 people in the US diagnosed with idiopathic pulmonary fibrosis (IPF), finding a community is important. IPF is a rare lung disease, which you can…

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Why Are US Children with Cystic Fibrosis Improving Faster than Canadian Kids?
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Why Are US Children with Cystic Fibrosis Improving Faster than Canadian Kids?

Why are US children with cystic fibrosis improving faster than Canadian kids? Newborn screenings and child healthcare programs may be behind the improvement among US children with cystic fibrosis. There's…

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What Really Causes Chronic Lung Infections in Children with Cystic Fibrosis?
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What Really Causes Chronic Lung Infections in Children with Cystic Fibrosis?

Not all bacteria are created equal, but all play a role in sustaining--or breaking down--health. And when you're talking about children with cystic fibrosis (CF), a lung disease that impairs…

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Is There Sexism in Parkinson’s Care? Researchers Say, Yes
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Is There Sexism in Parkinson’s Care? Researchers Say, Yes

Although Parkinson's disease (PD) affects men and women equally, researchers have discovered an area of disparity: care giving. A study published this month in Neurology by researchers at the Perelman School of Medicine…

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Throw Out the Bleach (Not the Baby) and Keep the Bath Water When Seeking Relief from Severe Atopic Dermatitis
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Throw Out the Bleach (Not the Baby) and Keep the Bath Water When Seeking Relief from Severe Atopic Dermatitis

When you suffer with severe atopic dermatitis you can get pretty desperate to do anything to relieve the itch and other symptoms. So taking a bleach-bath is not out of…

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This Hit Man Could Be a Lifesaver for those with Acute Myeloid Leukemia
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This Hit Man Could Be a Lifesaver for those with Acute Myeloid Leukemia

Leukemia is a deadly serial killer that will claim more than 24,500 lives this year, but the Independent Citizens Oversight Committee of the California Institute for Regenerative Medicine (CIRM) just…

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Survey Says: European Doctors Need to Learn More About Idiopathic Pulmonary Fibrosis Treatment
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Survey Says: European Doctors Need to Learn More About Idiopathic Pulmonary Fibrosis Treatment

If there was a proven medication to slow the progress of a chronic and deadly lung disease with no cure, why wouldn't you take it? That's the question that researchers…

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When Too Much of a Good Thing is Bad: Global Antibiotics Awareness Week Targets Antibiotic Overuse

Ninety years ago, when Sir Alexander Fleming discovered that bacteria left in a petri dish was killed by mold, a revolution in modern medicine began. Since 1928, penicillin and other…

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Courage: It’s What’s On and Off the Links for Rare Stevens-Johnson Syndrome PGA Player
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Courage: It’s What’s On and Off the Links for Rare Stevens-Johnson Syndrome PGA Player

Stevens-Johnson syndrome is a rare, serious skin disorder that affects the mucous membranes and causes painful blistering and peeling. These blisters can even form inside of the body, making it…

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Plan Now to Attend the 2018 Scleroderma National Patient Education Conference, July 27-29
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Plan Now to Attend the 2018 Scleroderma National Patient Education Conference, July 27-29

Finding a community is important for everyone -- but particularly if you have a chronic or rare disease. For the approximately 300,000 Americans with scleroderma, there's an active support group…

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How One Advocate Mom for Hypophosphatasia Created a Global Community
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How One Advocate Mom for Hypophosphatasia Created a Global Community

Advocates for people with rare diseases such as hypophosphatasia (HPP) are changing the world. Moms and dads, aunts and uncles, brothers, sisters, cousins, spouses and friends play a tremendous role…

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Crohn’s and Colitis Awareness Week is Dec. 1-7: Take this Quiz and Enter for a Chance to Win a Gift Certificate
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Crohn’s and Colitis Awareness Week is Dec. 1-7: Take this Quiz and Enter for a Chance to Win a Gift Certificate

Crohn’s disease may affect as many as 1.6 million Americans, according to the Crohn's & Colitis Foundation (CCF). Although it can strike at any age, Crohn's is more prevalent among…

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Better Than A Trip to Disney World? January 2018 Symposium in Orlando Focuses on Porphyrias
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Better Than A Trip to Disney World? January 2018 Symposium in Orlando Focuses on Porphyrias

On January 12-14, 2018 leading minds from around the world will convene in Orlando, Florida for the annual Heme Biosynthesis and the Porphyrias Recent Advances Conference. Yes, it's a mouthful,…

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One Size Helps All: Giving Tuesday on November 28 is the Best Gift for People with Multiple System Atrophy
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One Size Helps All: Giving Tuesday on November 28 is the Best Gift for People with Multiple System Atrophy

Move over Black Friday and Cyber Monday, the most important gifting day of the year serves a greater purpose. It's called Giving Tuesday, and for the past five years this…

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Have Bile Acid Synthesis Disorder? Struggling to Pay for Treatment? Caring Voice Can Help
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Have Bile Acid Synthesis Disorder? Struggling to Pay for Treatment? Caring Voice Can Help

Are you grateful for bile? You should be. But chances are you never think about the importance of this chemical compound that's found in the liver--until it's not there, or…

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Patient Worthy Says “Thank You” to all the Caregivers During National Family Caregivers Month
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Patient Worthy Says “Thank You” to all the Caregivers During National Family Caregivers Month

There are an estimated 7,000 rare diseases and each one takes its toll. The effects aren't just felt by the person with the condition, but also on those who care…

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November is Lung Cancer Awareness Month: Do You Know the Facts About This Lethal Disease?
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November is Lung Cancer Awareness Month: Do You Know the Facts About This Lethal Disease?

Lung Cancer Awareness Month started with a bang at the Press Conference and Panel Discussions today in the Holeman Lounge of the National Press Club. Two panels of renowned lung…

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