Artista con ICV pinta para crear conciencia

The Zebra painting is sold, but appropriate since those with rare diseases refer to themselves as Zebras after this common saying in the medical community. "When you hear hoofbeats think horses...not zebras."

Artista con ICV pinta para crear conciencia

Post author:Patient Worthy Contributor
Post published:May 12, 2016
Post category:CVID Rare Disease

Es a través del arte que Rebecca Zook gestiona los desafíos físicos y emocionales de vivir con una enfermedad crónica. Después de 3 años de ver decenas de médicos especialistas,…

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What Your Mother Never Told You About High Cholesterol

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What Your Mother Never Told You About High Cholesterol

Post author:Erica Zahn
Post published:May 12, 2016
Post category:Familial Hypercholesterolemia Homozygous Familial Hypercholesterolemia Rare Disease

Every so often, I hear someone grumpily complain about their high cholesterol and what they're doing to get it under control. The great majority of people will respond to a change…

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Smile for HAE Day 2016!

Smile for HAE Day 2016!

Post author:Rebekah
Post published:May 12, 2016
Post category:HAE Rare Disease

HAEi, is an international organization of patient organizations for those affected by C1-inhibitor deficiencies. During an HAE attack any part of the body can painfully swell. When this swelling affects…

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They Should Call it the Douglas Diagnostic!

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They Should Call it the Douglas Diagnostic!

Post author:Patient Worthy Contributor
Post published:May 12, 2016
Post category:Lyme Disease Rare Disease

Can the Protein in Your Urine Detect Lyme Disease? Living with Lyme is tough, but diagnosing Lyme disease is one of the biggest challenges for doctors. Peeing in a cup to assist in…

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Rare Disease Battle Meme

Rare Disease Battle Meme

Post author:Patient Worthy Contributor
Post published:May 12, 2016
Post category:Rare Disease

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Will This Exciting Research Inspire a Cure for CF?

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Will This Exciting Research Inspire a Cure for CF?

Post author:EmpatheticBadass
Post published:May 12, 2016
Post category:Cystic Fibrosis Rare Disease

With apologies to the website of the same name, I effing LOVE science. I can’t do science but I love how it’s so incredibly complex that it regularly romps right…

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Show Love For Rare Moms, Happy Mother’s Day

Show Love For Rare Moms, Happy Mother’s Day

Post author:Kristen Lord
Post published:May 12, 2016
Post category:Rare Disease

For a child without a rare disease, a mother is a lot of things: chef, financial adviser, maid etc. All moms deserve kudos for their hard work. Raising a child…

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What Happens When Money and Influence Clash with Lyme Disease

What Happens When Money and Influence Clash with Lyme Disease

Post author:Ronald Ledsen
Post published:May 12, 2016
Post category:Lyme Disease Rare Disease

In March, Delaware became the latest state to propose bills aimed at either combating Lyme disease or requiring expanded insurance coverage for the disease. Leaders in the state—which has one of…

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Meme Motivation – Let Your Inner Emoji Shine

Meme Motivation – Let Your Inner Emoji Shine

Post author:Patient Worthy Contributor
Post published:May 12, 2016
Post category:Rare Disease

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When a Misdiagnosis is the Difference Between Life and Death

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When a Misdiagnosis is the Difference Between Life and Death

Post author:Lady Kehveen Abernathy
Post published:May 12, 2016
Post category:HAE Rare Disease

There are three types of hereditary angioedema (HAE)—Type I, Type II, Type III. Original, right? Type I and II are the most common types of HAE. Type III is the rarest,…

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All Moms Are Super, Then There Are Rare Moms

All Moms Are Super, Then There Are Rare Moms

Post author:Kristen Lord
Post published:May 12, 2016
Post category:Rare Disease

"There will be times when you feel like you've failed, but in the eyes, heart, and mind of your child you are supermom." -Stephanie Precourt Even when you feel like…

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Liz answers, “Why Do I Keep Packing on the Pounds?”

Patient Worthy

Liz answers, “Why Do I Keep Packing on the Pounds?”

Post author:Patient Worthy Contributor
Post published:May 12, 2016
Post category:Cushing Disease Rare Disease

We have all heard about how LIFESTYLE FACTORS can drastically EFFECT HORMONAL BALANCE and ultimately IMPACT WEIGHT STATUS. We read tips and tricks from fitness gurus on social media all…

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MemeInfo – CVID

MemeInfo – CVID

Post author:Patient Worthy Contributor
Post published:May 12, 2016
Post category:CVID Rare Disease

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Here’s How to Understand Hemophilia Through Powerful Myths!

Here’s How to Understand Hemophilia Through Powerful Myths!

Post author:Alisha Stone
Post published:May 11, 2016
Post category:Hemophilia B

I recently read an interesting article about a new drug for hemophilia B called: Idelvion [Coagulation Factor IX (Recombinant), Albumin Fusion Protein] which I highly recommend that you read. It…

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5 personas notables que fueron diagnosticadas con espondilitis anquilosante

5 personas notables que fueron diagnosticadas con espondilitis anquilosante

Post author:Patient Worthy Contributor
Post published:May 11, 2016
Post category:Ankylosing Spondylitis Rare Disease

1. Leonard Trask Trask sufrió un incidente de equitación terrible cuando tenia unos 20 años que condujo a la inmovilidad y la deformación de su columna vertebral. Él entregó su vida…

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Meme – #CureCVID

Meme – #CureCVID

Post author:Patient Worthy Contributor
Post published:May 11, 2016
Post category:CVID Rare Disease

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Faith and Courage Help This Israeli Face Behcet’s

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Faith and Courage Help This Israeli Face Behcet’s

Post author:Ronald Ledsen
Post published:May 11, 2016
Post category:Behçet's Rare Disease

“Courage” is an adjective people throw around with relative ease to describe people and decisions that are not really courageous: A politician who vouches for a bill that may cost…

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If Full Time Moms Are Paid In Love, What Do Rare Moms Get?

If Full Time Moms Are Paid In Love, What Do Rare Moms Get?

Post author:Kristen Lord
Post published:May 11, 2016
Post category:Rare Disease

"Being a full-time mother is one of the highest salaried jobs... since the payment is pure love" -Mildred B. Vermont Mom's always have a lot on their plates. A mom…

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Have You Signed Up for 14 Days of Wellness Challenge? It’s That Simple!

Have You Signed Up for 14 Days of Wellness Challenge? It’s That Simple!

Post author:Patient Worthy Contributor
Post published:May 11, 2016
Post category:Myasthenia Gravis Rare Disease

Starting June 13th, better health will be delivered right to your e-mail front door - if you sign up! Seriously, 14 days of small, easy changes that result in a…

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News Alert: Breakthrough Cutting-Edge Lyme Disease Treatment Is Here!

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News Alert: Breakthrough Cutting-Edge Lyme Disease Treatment Is Here!

Post author:Alisha Stone
Post published:May 11, 2016
Post category:Lyme Disease Rare Disease

Could it be? Could it REALLY be true? A breakthrough treatment for Lyme disease is here?! Well, according to what I read on the PR Newswire, it is. A specialty…

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Students Raise Money, Awareness, and Empathy for Rare Diseases

Students Raise Money, Awareness, and Empathy for Rare Diseases

Post author:Erica Zahn
Post published:May 11, 2016
Post category:Rare Disease Tyrosinemia

Students at North Carolina State aren’t letting the grass grow beneath their feet, knowing their feet can make a difference in a sick child’s life. At a recent dance marathon…

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Rare Moms: What Bed Time Story Conquers These Monsters?

Rare Moms: What Bed Time Story Conquers These Monsters?

Post author:Kristen Lord
Post published:May 11, 2016
Post category:Rare Disease

Being a rare mom is a nightmare. You never expected to have to tell your child that they have something that you can't fix. You always thought that you'd be…

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Rare Mom: Tyrosinemia Tribulations

Rare Mom: Tyrosinemia Tribulations

Post author:Patient Worthy Contributor
Post published:May 11, 2016
Post category:Tyrosinemia

As a mom to a child with a rare disorder I face many challenges everyday. My son's disorder requires me to weigh everything he eats and account for it, give…

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Meme Motivation – Be Proud of Your Scars

Meme Motivation – Be Proud of Your Scars

Post author:Patient Worthy Contributor
Post published:May 11, 2016
Post category:Rare Disease

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If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!

If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!

Post author:Alisha Stone
Post published:May 11, 2016
Post category:mastocytosis Rare Disease

What’s it going to take before an effective treatment gets approved by the FDA for acute and aggressive mastocytosis? Well, hopefully the mastocytosis community won’t have to wait too long! In…

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