Rare Disease Archives - Page 256 of 291

Meme Awareness – Mastocytosis

Post author:Patient Worthy Contributor
Post published:April 15, 2016
Post category:Rare Disease

On a Mission to be Fit and Fabulous, Meet Liz

Post author:Patient Worthy Contributor
Post published:April 15, 2016
Post category:Cushing Disease Rare Disease

Liz is living with Cushing's Disease and is on a mission to be happy and well Patient Worthy is so excited to welcome Miss Liz Calabro to our family of incredible…

Sandro Georgi Photography, www.sgfo.to

Nolan’s Journey with Dystonia

Post author:Rebekah
Post published:April 15, 2016
Post category:Dystonia Rare Disease

Photography by Sandro Georgi Photography Nolan is an incredible person and father who is living with dystonia. He hasn't let the movement disorder hold him back from anything, even running a…

Meme Awareness – #MastocytosisCure

Post author:Patient Worthy Contributor
Post published:April 15, 2016
Post category:Rare Disease

The Rarest of The Rare, Do You Know Castleman?

Post author:Erica Zahn
Post published:April 15, 2016
Post category:Castleman Disease Rare Disease

The lymphatic system is the body's first line of defense against disease, so when lymphatic cells suddenly begin to multiply and overwhelm the immune system, it might be diagnosed as Castleman…

366 Talking Tips – Do more than just follow your Rx

Post author:Patient Worthy Contributor
Post published:April 15, 2016
Post category:Rare Disease

This App Is The Next Big Thing In Ankylosing Spondylitis Care

Post author:Erica Zahn
Post published:April 14, 2016
Post category:Ankylosing Spondylitis Rare Disease

Say all you want about the threat of robots taking over the world—technology is making lives easier for those of us who are human. And humans who suffer from ankylosing spondylitis, psoriatic…

Quick and Easy Truths About SCID for New Parents

Post author:Alisha Stone
Post published:April 14, 2016
Post category:Rare Disease SCID

The online Women’s Encyclopedia, had an interesting article about Severe Combined Immunodeficiency (SCID) and I’d like to share some of the highlights: Fast Facts That EVERY Parent Must Know SCID…

366 talking tips Memory Tip: Use Pen and Paper

Post author:Patient Worthy Contributor
Post published:April 14, 2016
Post category:Rare Disease

Why This New CVID Research Is The Most Exciting Thing You’ll Hear About Today

Post author:Ronald Ledsen
Post published:April 14, 2016
Post category:CVID Rare Disease Timely

Most researchers like to say that their work is “groundbreaking” or “revolutionary.” And most reporters—whether print or digital—like to use those words too, because they help get people’s attention. But…

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But I Got So Frustrated, I Stopped Asking Questions

Post author:Patient Worthy Contributor
Post published:April 14, 2016
Post category:Behçet's Rare Disease

While this information is great, there is still not enough known about Behcet's and its causes... A disease forecast report for Behcet's Disease was recently released by Research & Markets and further…

366 talking tips – Importance of talking hobbies with your doctor

Post author:Patient Worthy Contributor
Post published:April 14, 2016
Post category:Rare Disease

Rare Patient Voices Wanted: Speak Your Mind

Post author:James Stone
Post published:April 14, 2016
Post category:Rare Disease

Last year, the International Rare Diseases Research Consortium (IRDiRC) has established a task force with the objective of promoting Patient-Centered Outcome Measures in the area of rare diseases. What it means is this: The conversation…

Mastocytosis Awareness Meme

Post author:Patient Worthy Contributor
Post published:April 14, 2016
Post category:Rare Disease

Pixabay

5 lecciones que nos trae esta madre con fibrosis quística en el 2016

Post author:Patient Worthy Contributor
Post published:April 14, 2016
Post category:Cystic Fibrosis Rare Disease

La familia Corr ha tenido un año difícil. Resistente, seguro, pero igual de feliz. Ellos han estado adaptando a la vida con su hija mayor año Harriet. Poco después del…

Pixabay

Expert Advice: How to Bring Happiness Into Your Life With CGD

Post author:Alisha Stone
Post published:April 13, 2016
Post category:CGD Primary Immunodeficiencies Rare Disease

Do you consider yourself a happy person? Are you cheery all the time? Most of us are not, regardless of who we are or the conditions we may have—with or…

Pixabay

Is A Vegan Diet The Best Way To Fight Sjogren’s Syndrome?

Post author:Ronald Ledsen
Post published:April 13, 2016
Post category:Rare Disease Sjogren's Syndrome

When you’re living with a rare condition like Sjögren’s syndrome, sharing your diagnosis with a famous name can be both a blessing and a curse. Obviously, it’s helpful to be…

Meme Motivation – Believe in Yourself!

Post author:Patient Worthy Contributor
Post published:April 13, 2016
Post category:Rare Disease

Sjogren’s Awareness Meme

Post author:Patient Worthy Contributor
Post published:April 13, 2016
Post category:Rare Disease

Quick And Easy Facts About CGD To Get You Started

Post author:Erica Zahn
Post published:April 13, 2016
Post category:CGD Primary Immunodeficiencies Rare Disease

Primary Immune Deficiency Diseases, or PIDDs, affect approximately half a million Americans, but there's a twist: There are over 200 different PIDDs, all of which are genetically passed along. Finding…

Source: pixabay.com

Think You Know About Gaucher? Think Again

Post author:James Ernest Cassady
Post published:April 13, 2016
Post category:Gaucher Disease Rare Disease

How much do you know about Gaucher disease? If you live with the condition or know someone who does, you might know a lot. But have you ever tested your knowledge?…

Meme Motivation – Daily Battle for Consistency

Post author:Patient Worthy Contributor
Post published:April 13, 2016
Post category:Rare Disease

Opening a can of biscuits can be a terrifying ordeal but feeling like one... ooofff. Just in case you didn't know what a busted can of biscuits feels or looks…

“La Vecina” tiene un destino inspirador con la fibrosis quística y el Ejercicio

Post author:Patient Worthy Contributor
Post published:April 13, 2016
Post category:Cystic Fibrosis Rare Disease

Si alguna vez hubo una "girl next door", Ashley Coleman seria la manifestacion de esta idea, una mujer joven y bella, de ojos brillantes, rubia y muy activa! Ella tiene…

Pixabay

Is This Why Sjogren’s Is On The Rise?

Post author:Alisha Stone
Post published:April 12, 2016
Post category:Rare Disease Sjogren's Syndrome

When the legendary Venus Williams was diagnosed with Sjogren’s in 2011, it sent shock waves throughout the tennis industry and the world. Seems Venus is doing well these days, which…

New Show Brings Rare Patients Together

Post author:Rebekah
Post published:April 12, 2016
Post category:Rare Disease

TLC launched a new show less than a week ago that is of particular interest to the rare disease community. Their series “Two in a Million” builds off a concept…

Meme Awareness – Mastocytosis

On a Mission to be Fit and Fabulous, Meet Liz

Nolan’s Journey with Dystonia

Meme Awareness – #MastocytosisCure

The Rarest of The Rare, Do You Know Castleman?

366 Talking Tips – Do more than just follow your Rx

This App Is The Next Big Thing In Ankylosing Spondylitis Care

Quick and Easy Truths About SCID for New Parents

366 talking tips Memory Tip: Use Pen and Paper

Why This New CVID Research Is The Most Exciting Thing You’ll Hear About Today

But I Got So Frustrated, I Stopped Asking Questions

366 talking tips – Importance of talking hobbies with your doctor

Rare Patient Voices Wanted: Speak Your Mind

Mastocytosis Awareness Meme

5 lecciones que nos trae esta madre con fibrosis quística en el 2016

Expert Advice: How to Bring Happiness Into Your Life With CGD

Is A Vegan Diet The Best Way To Fight Sjogren’s Syndrome?

Meme Motivation – Believe in Yourself!

Sjogren’s Awareness Meme

Quick And Easy Facts About CGD To Get You Started

Think You Know About Gaucher? Think Again

Meme Motivation – Daily Battle for Consistency

“La Vecina” tiene un destino inspirador con la fibrosis quística y el Ejercicio

Is This Why Sjogren’s Is On The Rise?

New Show Brings Rare Patients Together

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

“Shades of Psoriasis”: Plaque Psoriasis and Sharing Your Story

Understanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes

We Need Equity and Diversity Within Rare Disease Research

DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics - Part 1

Bridging the Diversity Gap in Healthcare

Congratulations to the 2023 Recipients of the Diversity in Lupus Research Awards!

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

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