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HAE

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You’ll Want To Know What This Scientist Found Out About HAE
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You’ll Want To Know What This Scientist Found Out About HAE

  • Post author:Patient Worthy Contributor
  • Post published:August 5, 2015
  • Post category:HAE/Rare Disease

Hereditary angioedema, or HAE, is a life-threatening rare genetic disease with a lot of still-unanswered questions. However, scientists at the Karolinska Institute in Sweden, Science Daily reports, may have answered…

Continue Reading You’ll Want To Know What This Scientist Found Out About HAE

Learn To Be Brave From This Inspiring HAE Millennial

  • Post author:Rebekah
  • Post published:June 18, 2015
  • Post category:HAE/Rare Disease

Amanda struggled for years to understand the pain and swelling that she kept experiencing. Her doctors couldn't figure out was wrong and she never knew why her throat would sometimes…

Continue Reading Learn To Be Brave From This Inspiring HAE Millennial
Why do Pharma Companies Care About Rare Diseases?

Why do Pharma Companies Care About Rare Diseases?

  • Post author:Patient Worthy Contributor
  • Post published:June 17, 2015
  • Post category:HAE/Rare Disease

Why Pharma cares more and more about Rare Diseases Congress. The FDA. Patient Advocates. And Venture Philanthropy. When it comes to rare diseases, medicines haven't always been readily available. A…

Continue Reading Why do Pharma Companies Care About Rare Diseases?

5 Things to Do to Prepare Your HAE Child For School

  • Post author:Rebekah
  • Post published:June 16, 2015
  • Post category:HAE/Rare Disease

Sudden HAE attacks can result in hospitalization or a few days in bed at home; forcing many patients to miss work or school.A study was conducted in Germany, Denmark, and…

Continue Reading 5 Things to Do to Prepare Your HAE Child For School

HAE Triggers: Can you Avoid Them?

  • Post author:Patient Worthy Contributor
  • Post published:June 16, 2015
  • Post category:HAE/Rare Disease

Many people with hereditary angioedema (HAE) will tell you that really aren't sure what causes their attacks, but they can identify some common triggers such as stress, anxiety, minor trauma…

Continue Reading HAE Triggers: Can you Avoid Them?
Katie Never Expected THIS at HAE Day

Katie Never Expected THIS at HAE Day

  • Post author:EmpatheticBadass
  • Post published:June 15, 2015
  • Post category:HAE/Rare Disease

After six years of misdiagnoses and crushing disappointment, a doctor finally figured out that Katie had a rare genetic condition centered around a protein called C1 inhibitor. So many emotions…

Continue Reading Katie Never Expected THIS at HAE Day

How Long Will Oz Miss the Boat on HAE?

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:HAE/Rare Disease

Sufferers of the rare and potentially life-threatening disease Hereditary angioedema (HAE) are raising red flags because Australia is lagging behind on diagnosing and treating the disease. HAE allows the body's…

Continue Reading How Long Will Oz Miss the Boat on HAE?

These Shocking HAE Stories Will Make You Want To See Change

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:HAE/Rare Disease

There are some crazy diseases out in the world today, and hereditary angioedema, or HAE, is one of them. To see the symptoms in action, you may have to rub your…

Continue Reading These Shocking HAE Stories Will Make You Want To See Change
A Case of “Big Brother” Being Good for HAE Sufferers

A Case of “Big Brother” Being Good for HAE Sufferers

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:HAE/Rare Disease

Suffering From HAE?! Biofeedback Reporting May Save Your Life! There's a lot of buzz on BioRx, a national specialty pharmaceutical company, based in Cincinnati, Ohio. It's established a successful Biofeedback…

Continue Reading A Case of “Big Brother” Being Good for HAE Sufferers
In a crisis, seconds really count, especially for patients with rare diseases.

In a crisis, seconds really count, especially for patients with rare diseases.

  • Post author:Patient Worthy Contributor
  • Post published:June 13, 2015
  • Post category:HAE/Rare Disease

You can't always be prepared for an emergency- that is kind of an oxymoron. You can however think ahead and put in place an emergency plan.  During a crisis, seconds really count,…

Continue Reading In a crisis, seconds really count, especially for patients with rare diseases.

5 Remarkable Reasons Why Battling HAE is like Being a Superhero

  • Post author:Patient Worthy Contributor
  • Post published:June 12, 2015
  • Post category:HAE/Rare Disease

When people hear disease, sickness, or chronic illness, 9/10 times they think of weakness. They sadly only look at what they can see, but neglect the heart. Truth is people…

Continue Reading 5 Remarkable Reasons Why Battling HAE is like Being a Superhero

10 Shocking Things Cheaper Than Your HAE Drugs

  • Post author:PW Blogger
  • Post published:June 8, 2015
  • Post category:HAE/Rare Disease

In a recent study published by Prime Therapeutics, the company reported that the annual cost of treatment to an HAE patient is over $300,000. We wanted to illustrate the ridiculous…

Continue Reading 10 Shocking Things Cheaper Than Your HAE Drugs
Doctor Said Crazy, Her Willpower Knew Better

Doctor Said Crazy, Her Willpower Knew Better

  • Post author:Patient Worthy Contributor
  • Post published:June 5, 2015
  • Post category:HAE/Rare Disease

Meet the Attwood family. Out of the 8 family members present, 4 of them are living with Hereditary Angioedema. The heart of the family is led by a strong women…

Continue Reading Doctor Said Crazy, Her Willpower Knew Better

Big Pharma Neglected Them. This HAE Team Gave Them Hope

  • Post author:Patient Worthy Contributor
  • Post published:June 4, 2015
  • Post category:HAE

In the famous film adaption of the musical, Cabaret, Sally Bowles and the Master of Ceremonies perform the famous lines "Money Makes the World Go Round." Although its obvious in…

Continue Reading Big Pharma Neglected Them. This HAE Team Gave Them Hope
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You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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