Patient Worthy Contributor – Page 80

Meet Maria: Behind Closed Doors

Post author:Patient Worthy Contributor
Post published:September 29, 2015
Post category:Complex Regional Pain Syndrome Rare Disease

I'm Maria; I'm a wife and mother, fashionista and shoe enthusiast. Not all of my days are bad, but no one knows about the really bad days because I hide…

Meet Melissa: The Selfless Baker

Post author:Patient Worthy Contributor
Post published:September 29, 2015
Post category:Rare Disease

Meet Melissa, a wife, mother and advocate. Patient Worthy interviewed Melissa about her #InvisibleIllness - gastroparesis. Almost two years ago, un-welcomed and without warning, gastroparesis enetered Melissa's life. “I was fine one day…

Meet Oakley: A Little Boy with a Big Fight

Post author:Patient Worthy Contributor
Post published:September 29, 2015
Post category:Rare Disease

This is my son Oakley, a five year old with an adorable smile, who loves the Ninja Turtles, and you'd never guess what we've been through. My little man has…

Meme Monday: The Invisible Illness Awareness Edition

Post author:Patient Worthy Contributor
Post published:September 28, 2015
Post category:Rare Disease

It's #IIWK15 (Invisible Illness Awareness Week) and it's impossible for us to be more pumped about it! If you have no idea what #IIWK15 is all about, check out blogger…

Meet Lisa Copen: The Voice of Invisible Illness Awareness

Post author:Patient Worthy Contributor
Post published:September 28, 2015
Post category:Rare Disease

My name is Lisa and I am living with rheumatoid arthritis (RA) and fibromyalgia. #myinvisiblefight is ongoing, but I have faith, family, and friends. This is my story. I was just…

Invisible Illness Awareness Week 2015 Starts Today!

Post author:Patient Worthy Contributor
Post published:September 28, 2015
Post category:Rare Disease

This introduction to Invisible Illness Awareness Week or as we like to call it #IIWK15 was written for publication on Patient Worthy by Lisa Copen, the founder and director of II…

Editor’s Choice Weekend Roundup: 9-25-15

Post author:Patient Worthy Contributor
Post published:September 25, 2015
Post category:Cystinosis Dystonia Rare Disease

Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] Learn why this Viral Message is so Important After a waitress took her speech and…

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This Mom’s Heart Will Make You Want to Act

Post author:Patient Worthy Contributor
Post published:September 25, 2015
Post category:Dystonia Rare Disease

It's September! You know what that means? Happy "Dystonia Awareness Month!" Maybe "Happy" is the wrong word... Because, while spreading awareness is always something to cheer about, dystonia is not. Here…

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Attend The Global Genes Patient Advocacy Summit Live From Your Couch!

Post author:Patient Worthy Contributor
Post published:September 25, 2015
Post category:Rare Disease

Thank goodness for the 21st Century! If you have been dying to attend this year's Global Genes Patient Advocacy Summit in California, but there's no way you are making it…

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5 Reasons Why This New HoFH Drug Will Have You Jumping for Joy

Post author:Patient Worthy Contributor
Post published:September 24, 2015
Post category:Familial Hypercholesterolemia Homozygous Familial Hypercholesterolemia Rare Disease

If you’ve been suffering from high cholesterol with dismally low-density lipoprotein (LDL) scores, here’s some breaking news that could save your life! The FDA has announced the approval of a…

Why Aren’t Indian Cystinosis Patients Worth Big Pharmas Time?

Post author:Patient Worthy Contributor
Post published:September 24, 2015
Post category:Cystinosis Rare Disease

Cysteamine Bitartrate is its name, and savin’ lives is its game. It’s not often that you hear a drug referred to as “life-saving” (probably due to legal ramifications), but that’s…

Here’s Why People With Dystonia Are Basically Twilight Vampires

Post author:Patient Worthy Contributor
Post published:September 24, 2015
Post category:Dystonia Rare Disease

We know that overexposure to the sun cause a serious burn-peel situation, but did you know that the sun can be especially risky for those with a predisposition to developing…

Blood and Guts? Wait Til You See How This Dutch Artist Deals With Cystinosis

Post author:Patient Worthy Contributor
Post published:September 23, 2015
Post category:Cystinosis Rare Disease

Rare Connect explains the life of Annie Kwakkel who was born with cystinosis, a genetic condition that affects approximates 1 in 100,00 to 200,000 newborns worldwide. Today, people living with…

Science Finally Answers This 3,800 Year-Old Man’s Gigantic Mystery

Post author:Patient Worthy Contributor
Post published:September 23, 2015
Post category:Acromegaly Rare Disease

"A protruding brow, lantern jaw, thick leg and arm bones", and incredibly crowded teeth were all characteristics of a recently found 3,800-year-old skeleton as reported by Western Digs. Each feature…

PI Drug RI-002 BLA accepted by FDA

Post author:Patient Worthy Contributor
Post published:September 22, 2015
Post category:Primary Immunodeficiencies Rare Disease

In July, Patient Worthy published BREAKING news about ADMA Biologics, Inc.'s promising new drug; RI-002, a specialty IGIV treatment for patients who are immune-compromised. RI-002 data proved the drug's ability to prevent…

A Call For Culture Shift in Pharma

Post author:Patient Worthy Contributor
Post published:September 22, 2015
Post category:Rare Disease

The National Health Council and The Genetic Alliance are asserting the need for further patient engagement and incorporation of patient perspectives in drug development and the pharmaceutical industry. In…

The Dystonia Muse on being “uneased” by your disease

Post author:Patient Worthy Contributor
Post published:September 22, 2015
Post category:Dystonia Rare Disease

September is almost over! #signtheDAMpetition Guest Blogger: Pamela Sloate airs some of her neurological dirty laundry in her original blog post, Dis*ease Unease. For most of my life, I’ve been…

Meme Monday: 3 Images to Brighten Someone’s Day

Post author:Patient Worthy Contributor
Post published:September 21, 2015
Post category:Rare Disease

This Meme Monday here are some funny and encouraging memes to share with your friends and family, no matter the rare condition. All that we ask is when you share…

She Needed a Liver, But What She Gives is What’s Special

Post author:Patient Worthy Contributor
Post published:September 21, 2015
Post category:Rare Disease Tyrosinemia

Living with a serious illness affects more than one's physical health; mental health often suffers, too. Which is one reason Anna Barlow took note when she met Anna Sirieix. The…

Alex Trebek of All People Saved This Radio Announcer’s Life

Post author:Patient Worthy Contributor
Post published:September 21, 2015
Post category:Acromegaly Rare Disease

Go on your average radio show website—when you check out the bios of your favorite hosts, putting a face to those funky fresh tones you listen to on your way…

Why Patient Perspective is Worthy of Industry Ears

Post author:Patient Worthy Contributor
Post published:September 19, 2015
Post category:Rare Disease

Patient Worthy attended the EveryLife Foundation’s annual forum this past Tuesday in Washington, DC. It was a full day workshop about why incorporating the patient perspective into the various phases of developing drugs…

Editor’s Choice Weekend Roundup: 9-18-15

Post author:Patient Worthy Contributor
Post published:September 18, 2015
Post category:Acromegaly Dystonia Homozygous Familial Hypercholesterolemia

Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] This is Why People Are Shakin’ It for Dystonia Awareness Month When dystonia leaves you…

Follow Patient Worthy Live at the Orphan Drug Summit in Copenhagen!

Post author:Patient Worthy Contributor
Post published:September 18, 2015
Post category:Rare Disease

Patient Worthy is bringing another conference to you through live tweets (@PatientWorthy)! Yesterday and today our director of advocacy is attending the Orphan Drug Summit in Copenhagen , Denmark. Among…

Why Your Disease Doesn’t Make You a Comeback Kid

Post author:Patient Worthy Contributor
Post published:September 18, 2015
Post category:Ankylosing Spondylitis Rare Disease

The world loves a good comeback story. And I am all for giving people their well-deserved “congrats” when they’ve faced down adversity and accomplished something fantastic. Franklin Gutierrez, for example,…

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This Little Girl’s Plea for Cake Will Make You Throw on an Apron

Post author:Patient Worthy Contributor
Post published:September 17, 2015
Post category:GLUT1 DS Rare Disease

As a young girl, Remi Savioz wanted one thing. And no, it wasn’t a puppy, a bike, or even a trip to Disneyland… What Remi wanted was a GLUT1 DS…

Meet Maria: Behind Closed Doors

Meet Melissa: The Selfless Baker

Meet Oakley: A Little Boy with a Big Fight

Meme Monday: The Invisible Illness Awareness Edition

Meet Lisa Copen: The Voice of Invisible Illness Awareness

Invisible Illness Awareness Week 2015 Starts Today!

Editor’s Choice Weekend Roundup: 9-25-15

This Mom’s Heart Will Make You Want to Act

Attend The Global Genes Patient Advocacy Summit Live From Your Couch!

Why Aren’t Indian Cystinosis Patients Worth Big Pharmas Time?

Here’s Why People With Dystonia Are Basically Twilight Vampires

Blood and Guts? Wait Til You See How This Dutch Artist Deals With Cystinosis

Science Finally Answers This 3,800 Year-Old Man’s Gigantic Mystery

PI Drug RI-002 BLA accepted by FDA

A Call For Culture Shift in Pharma

The Dystonia Muse on being “uneased” by your disease

Meme Monday: 3 Images to Brighten Someone’s Day

She Needed a Liver, But What She Gives is What’s Special

Alex Trebek of All People Saved This Radio Announcer’s Life

Why Patient Perspective is Worthy of Industry Ears

Editor’s Choice Weekend Roundup: 9-18-15

Follow Patient Worthy Live at the Orphan Drug Summit in Copenhagen!

Why Your Disease Doesn’t Make You a Comeback Kid

This Little Girl’s Plea for Cake Will Make You Throw on an Apron

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