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Daily Archives: November 15, 2017

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This Family Has High Hopes for Gene Therapy Approval
Source: Pixabay

This Family Has High Hopes for Gene Therapy Approval

  • Post author:Andres Rovira
  • Post published:November 15, 2017
  • Post category:RPE65-associated Leber Congenital Amaurosis

Sam and Anna Beiler have not one, but two children with a rare degenerative disease that causes blindness. As of now, there is no treatment. Last month, however, the FDA…

Continue Reading This Family Has High Hopes for Gene Therapy Approval
Glimmer: An Inclusive Dating App
source: pixabay.com

Glimmer: An Inclusive Dating App

  • Post author:Patient Worthy Contributor
  • Post published:November 15, 2017
  • Post category:Rare Disease

For better or for worse, dating has become increasingly dependent on swiping, matching, and shaking your phone. We live in a world of pings, messages, and alerts. The smartphone dating…

Continue Reading Glimmer: An Inclusive Dating App
Art Series Raises Awareness for Rare Disease
Source: Pixabay

Art Series Raises Awareness for Rare Disease

  • Post author:Andres Rovira
  • Post published:November 15, 2017
  • Post category:Schinzel-Giedion syndrome

When Anthony Byrd's son, Xavier, was born, something didn't feel right. A closer look at Xaier's face using a heat lamp revealed that something was indeed not right. Following that,…

Continue Reading Art Series Raises Awareness for Rare Disease
Tenacious Indian Student Compelled to Learn About His Rare Disease
Source: Pixabay

Tenacious Indian Student Compelled to Learn About His Rare Disease

  • Post author:Andres Rovira
  • Post published:November 15, 2017
  • Post category:Behçet's/Rare Disease

Sixteen-year-old Ashrai Kumar has endured many nights of tossing and turning in pain due to ulcers caused from Behcet's disease. This chronic condition is seen prominently in Japan, Asia, and…

Continue Reading Tenacious Indian Student Compelled to Learn About His Rare Disease
Girl’s Rare Disease Aids the Fight Against Cancer
Source: Pixabay

Girl’s Rare Disease Aids the Fight Against Cancer

  • Post author:Andres Rovira
  • Post published:November 15, 2017
  • Post category:Multiple Myeloma

There's new hope on the rise for multiple myeloma and other forms of cancer. Investigations are underway into a rare disease called NGLY1 deficiency and the clues are looking good.…

Continue Reading Girl’s Rare Disease Aids the Fight Against Cancer
If You Have Myasthenia Gravis, Your Flu Shot Matters More Than You Might Think

If You Have Myasthenia Gravis, Your Flu Shot Matters More Than You Might Think

  • Post author:Patient Worthy Contributor
  • Post published:November 15, 2017
  • Post category:Myasthenia Gravis/Rare Disease

First, I want to address everyone, whether or not you have myasthenia gravis. If you're able to get the flu vaccine, but haven't yet, you should get on that as…

Continue Reading If You Have Myasthenia Gravis, Your Flu Shot Matters More Than You Might Think
Put Down the Poutine! Doctors Sound Alarm about FH in Canada
Source: Pixabay

Put Down the Poutine! Doctors Sound Alarm about FH in Canada

  • Post author:Chloe Easterbrook
  • Post published:November 15, 2017
  • Post category:Familial Hypercholesterolemia/Rare Disease

Can increasing awareness and early screenings have an impact on heart health in Canada? When it comes to familial hypercholesterolemia (FH), Vancouver’s top medical advisors believe it can, according to…

Continue Reading Put Down the Poutine! Doctors Sound Alarm about FH in Canada
How Often Should You Google Your Rare Disease?
Source: Pixabay

How Often Should You Google Your Rare Disease?

  • Post author:Patient Worthy Contributor
  • Post published:November 15, 2017
  • Post category:Ehlers-Danlos Syndrome/POTS/Rare Disease

It had never even crossed my mind that there was a connection between my bruised skin, clicking jaw, Sally Hansen's strengthening nail polish, the blue skin on my hands in…

Continue Reading How Often Should You Google Your Rare Disease?
Bill Gates Pledges $50 Million to Find Cure for Alzheimer’s Disease
Source: Pixabay

Bill Gates Pledges $50 Million to Find Cure for Alzheimer’s Disease

  • Post author:Jean Martell
  • Post published:November 15, 2017
  • Post category:Rare Disease

"I believe there is a solution." Those are billionaire mogul Bill Gates's words regarding the future of Alzheimer's. "Any type of treatment would be a huge advance from where we…

Continue Reading Bill Gates Pledges $50 Million to Find Cure for Alzheimer’s Disease
16 Years Later, 9-11 May Be Causing Cancer at a New York High School
Source: Pixabay

16 Years Later, 9-11 May Be Causing Cancer at a New York High School

  • Post author:Patient Worthy Contributor
  • Post published:November 15, 2017
  • Post category:Ovarian Cancer/Rare Disease

It goes without saying that September 11th left a scar on the US that our country is still healing from 16 years later-- especially the families and communities who lost…

Continue Reading 16 Years Later, 9-11 May Be Causing Cancer at a New York High School

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Metastatic Breast Cancer: Navigating Grief


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The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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