Rare Disease Archives - Page 260 of 291

Rare Disease Meme – Coffee: A cup with of benefits

Post author:Patient Worthy Contributor
Post published:April 2, 2016
Post category:Rare Disease

Syngap-1 First International Conference!

Post author:Rebekah
Post published:April 1, 2016
Post category:Rare Disease

Congratulate this Mom- She knew something was wrong. She went through 19 specialists in 4 years. She eventually got a diagnoses. Her son, had Syngap1, a very rare, gene based,…

Drum Roll Please and the Winner is …

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Acromegaly Rare Disease

Congratulations to Kristin, the winner of a $500 travel stipend to get to the 2016 Acromegaly Community Bi-annual Meeting! Patient Worthy is so excited to meet you Kristin! We are excited to…

Editor’s Choice: 3 Powerful Messages From Inspiring Women

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Acromegaly Cystinosis Dysautonomia Lyme Disease POTS Rare Disease

It's officially April and it's officially the WEEKEND! PW Contributor Alexis writes of how her experience with PTSD relates to going through the process of diagnosis and treatment of chronic…

Rare Disease Meme – Silence and Reflection

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

Source: Pixabay.com

A Van. A Plan. A Life Saved From Aplastic Anemia

Post author:EmpatheticBadass
Post published:April 1, 2016
Post category:Aplastic anemia Rare Disease

OK... I hereby promise to never again make a blonde jokes. Why? Because two blonde sisters, Sam and Alex Kimura, are definitely no joke. They are a powerhouse of promise…

Rare Disease Meme – Habit

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

Source: Pixabay

How Will You Be Celebrating World PI Week This Year?

Post author:Ronald Ledsen
Post published:April 1, 2016
Post category:CGD Primary Immunodeficiencies Rare Disease SCID

World PI Week is coming up later this month, from April 22-29. So what better way to celebrate than to learn what exactly PI is! Not to be confused with Pi…

Pixabay

4 Year Old with Super Cool Glasses and Myasthenia Gravis

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Myasthenia Gravis Rare Disease

When Myasthenia Gravis is diagnosed in a child, it is called juvenile myasthenia gravis (JMG). But for 4 year old Julius Chatman, the diagnosis was ocular myasthenia gravis. A very rare case,…

366 Talking Tips – Watch Your Mouth!

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

source: pixabay.com

The Best Advice To Solve Problems With PI And Parents

Post author:Kiki Jones
Post published:April 1, 2016
Post category:CVID Primary Immunodeficiencies Rare Disease

If there was one song that could get me poppin’ throughout my childhood, it would have to be “Parents Just Don’t Understand” by the Fresh Prince himself. Come on, you…

Rare Disease Meme – Pain and Sickness

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

#SarcoidosisAwareness: Treatment

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

we may look different on the outside, but each one of us is unique on the inside, and that holds true more so when it comes to treatment options. I'm…

Consejos sobre cómo hacer que las inyecciones para su hijo no sean traumaticas

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:CAPS FCAS Neonatal onset multisystem inflammatory disease Rare Disease

Los tratamientos para enfermedades autoinflamatorias comúnmente requieren un paciente para recibir inyecciones debajo de la piel, lo que puede ser difícil si usted es el padre de un niño pequeño…

Rare Disease Meme – Simplicity

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

8 Facts You May Not Know About Narcolepsy

Post author:Winnie Nash
Post published:March 31, 2016
Post category:Narcolepsy Rare Disease

Do you have narcolepsy? Have you ever heard any of the following? “You should get a little more rest; then you’ll be fresh and ready to go.” “Exercise and eating healthy…

Rare Disease Meme – You Know You’re Sick When

Post author:Patient Worthy Contributor
Post published:March 31, 2016
Post category:Rare Disease

Did Ya Know? Students with Narcolepsy Can Get Extra Time for SAT & ACT

Post author:Ronald Ledsen
Post published:March 31, 2016
Post category:Narcolepsy Rare Disease

Life with narcolepsy can be fraught with daily challenges. Excessive daytime sleepiness, cataplexy, or other narcolepsy symptoms can interfere with daily life and activities and make concentration difficult. And for…

Orphan Eye Disease Drug News: When Your Eyes are Affected

Post author:Patient Worthy Contributor
Post published:March 31, 2016
Post category:Behçet's Intracranial Hypertension Rare Disease Stargardt Disease

Discovery Phase Drugs for Orphan Eye Diseases IVMED-100- 80- 90 are currently without generic drug names. They are under development for the treatment of orphan eye diseases by iVeena, LLC who has 6…

#SarcoidosisAwareness: Cause

Post author:Patient Worthy Contributor
Post published:March 31, 2016
Post category:Rare Disease

RESEARCHERS BELIEVE SARCOIDOSIS IS ASSOCIATED WITH AN ABNORMAL IMMUNE SYSTEM RESPONSE, BUT WHAT TRIGGERS THIS RESPONSE IS NOT KNOWN. NOR DO DOCTORS KNOW WHETHER HEREDITY, ENVIRONMENT, OR LIFESTYLE AFFECTS THE…

#SarcoidosisAwareness: Fact!

Post author:Patient Worthy Contributor
Post published:March 31, 2016
Post category:Rare Disease

VTP-43742 enters Phase I for Ankylosing Spondylitis

Post author:Patient Worthy Contributor
Post published:March 31, 2016
Post category:Ankylosing Spondylitis Rare Disease Timely

Vitae Pharmaceuticals Announces Positive Top-Line Results From Initial Phase 1 Study of First-in-Class RORyt Inhibitor VTP-43742 in Autoimmune Disorders back in September. Vitae Pharmaceuticals, Inc. (“Vitae”) is developing VTP-43742 for…

Breaking News: New Hope for PAH Sufferers! Is This THE Cure?

Post author:Alisha Stone
Post published:March 31, 2016
Post category:pulmonary arterial hypertension Rare Disease

Congratulations to Accelmed, the equity investors, who backed SoniVie, a startup company based in Israel that's made a breakthrough treatment device for pulmonary arterial hypertension (PAH). Of course, we owe a…

Is Cataplexy with Narcolepsy a Laughing Matter?

Post author:Erica Zahn
Post published:March 31, 2016
Post category:Narcolepsy Rare Disease

First of all, what the heck is cataplexy? You may ask if you are unfamiliar the term. Cataplexy is what happens when a person suddenly loses all voluntary muscle control, and…

Te diagnosticaron con una enfermedad rara: 4 cosas que puedes hacer si no hablas inglés

Post author:Patient Worthy Contributor
Post published:March 31, 2016
Post category:Rare Disease

¿Y ahora qué? Llegaste al doctor para hacerte un chequeo y sales con un diagnostico que cambia tu vida entera. Sea, Distonía, Acromegalia, Angioedema Hereditario (AEH) o la enfermedad de…

Rare Disease Meme – Coffee: A cup with of benefits

Syngap-1 First International Conference!

Drum Roll Please and the Winner is …

Editor’s Choice: 3 Powerful Messages From Inspiring Women

Rare Disease Meme – Silence and Reflection

A Van. A Plan. A Life Saved From Aplastic Anemia

Rare Disease Meme – Habit

How Will You Be Celebrating World PI Week This Year?

4 Year Old with Super Cool Glasses and Myasthenia Gravis

366 Talking Tips – Watch Your Mouth!

The Best Advice To Solve Problems With PI And Parents

Rare Disease Meme – Pain and Sickness

#SarcoidosisAwareness: Treatment

Consejos sobre cómo hacer que las inyecciones para su hijo no sean traumaticas

Rare Disease Meme – Simplicity

8 Facts You May Not Know About Narcolepsy

Rare Disease Meme – You Know You’re Sick When

Did Ya Know? Students with Narcolepsy Can Get Extra Time for SAT & ACT

Orphan Eye Disease Drug News: When Your Eyes are Affected

#SarcoidosisAwareness: Cause

#SarcoidosisAwareness: Fact!

VTP-43742 enters Phase I for Ankylosing Spondylitis

Breaking News: New Hope for PAH Sufferers! Is This THE Cure?

Is Cataplexy with Narcolepsy a Laughing Matter?

Te diagnosticaron con una enfermedad rara: 4 cosas que puedes hacer si no hablas inglés

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!

Let’s Work Together!

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