Rare Disease Archives - Page 264 of 291

366 Talking Tips

Post author:Patient Worthy Contributor
Post published:March 17, 2016
Post category:Rare Disease

no one likes it when you're telling your story or sharing an experience and someone jumps to a conclusion about what you're saying, who you are or what the point…

You Want to Put What in Me? New Treatment for XSCID

Post author:James Ernest Cassady
Post published:March 16, 2016
Post category:CGD Primary Immunodeficiencies Rare Disease SCID Timely

I have two sisters, each with the remarkable talent to walk into a thrift store with only a few bucks and walk out with a brand new wardrobe. Growing up in…

Editor’s Note on Rare Disease Day NIH 2016

Post author:Patient Worthy Contributor
Post published:March 16, 2016
Post category:Lyme Disease Rare Disease

When I walked in to Rare Disease Day 2016 at NIH, the atmosphere was full of hope, on a scientific level, legislative level and patient level. And I'm not just…

This Amazing Doctor Is a Hero Castleman Deserves

Post author:Kiki Jones
Post published:March 16, 2016
Post category:Castleman Disease Rare Disease

For many doctors, Castleman disease seems impenetrable. Not only is the disease incredibly rare (only affecting maybe 30,000 people in the United States), its innocuous smattering of symptoms are easily…

366 Talking Tips

Post author:Patient Worthy Contributor
Post published:March 16, 2016
Post category:Rare Disease

There's nothing more important than being able to create collaborative, meaningful and positive conversations between Healthcare Providers and Patients and vice-versa. Another day, another talking tip courtesy of Edward Leigh from…

Will People With Rare Diseases Be Exploited By Gene Modification?

Post author:Farrah Fontaine
Post published:March 16, 2016
Post category:Rare Disease

If you could alter your child's genes to ensure they wouldn't inherit a rare, chronic disease, would you? That's the ethical question swirling around scientific circles these days, and it's prompted…

Rare Disease Inspirational Memes – Shelly

Post author:Patient Worthy Contributor
Post published:March 16, 2016
Post category:Rare Disease

No matter your situation, whether you have a rare disease or got cut with a can trying to feed your cat it's meal, we all have scars that tell a…

Rare Disease Mom’s Inspirational Memes – Shelly

Post author:Patient Worthy Contributor
Post published:March 16, 2016
Post category:Rare Disease

Every day we wake up, put on our shoes and meander through our daily activities. But for those living with a rare disease, meandering feels more like a daily fight…

What to Do If You Suspect Your Coworker Has Narcolepsy?

Post author:Alisha Stone
Post published:March 16, 2016
Post category:Narcolepsy Rare Disease

I just finished reading about narcolepsy lifestyle adjustments on the Narcolepsy Network’s site, which I found helpful, but I’m really torn about what to do. Ugh. I have a colleague…

Rare Disease Mom’s Inspirational Memes – Shelly

Post author:Patient Worthy Contributor
Post published:March 16, 2016
Post category:Rare Disease

From time to time, whenever we are going through a tough time, whether it be at our jobs, in our personal lives or in our relationships, we tend to forget…

Este papá se detendrá ante nada para Su Hijo con fibrosis quística

Post author:Patient Worthy Contributor
Post published:March 16, 2016
Post category:Cystic Fibrosis Rare Disease

No tengo ninguna experiencia que viven con fibrosis quística o entiendo lo que se siente al pasar por el régimen diario. Yo sé lo que se siente al dar atención…

Rare Disease Mom’s Inspirational Memes – Shelly

Post author:Patient Worthy Contributor
Post published:March 16, 2016
Post category:Rare Disease

With all the hype around Virtual Reality headsets, 3D Printing and all other sorts of awesome and weird tech created to "enhance" our already hyper connected lives, the meme above…

Can Bee Pollen Actually Help Recovery From Disease Treatment?

Post author:Patient Worthy Contributor
Post published:March 15, 2016
Post category:Dysautonomia Lyme Disease POTS Rare Disease

I have been off of long-term antibiotic treatment for Lyme disease now for 6 months. How FREEING! During treatment I had so many chemicals running around my body. I had…

Rare Disease Mom’s Inspirational Memes – Shelly

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

Shelly - Back at it again with the meme game! (if you've been living under a rock, click here to check out a kid made famous for wearing white vans...…

Rare Disease Mom’s inspirational memes – Shelly

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

Shelly is a wife and mother of 2 amazing kids. She is also living with rare chronic conditions called Intracranial Hypertension and Primary Lateral Sclerosis among a myriad of…

Do You Know What To Do When Syncope Strikes?

Post author:Erica Zahn
Post published:March 15, 2016
Post category:POTS Rare Disease

Have you ever heard of "syncope?" First of all, it's pronounced SING-co-pee, and you're not alone if the term is new to you. Syncope is thought to be responsible for a…

Rare Disease Day Highlights

Post author:Rebekah
Post published:March 15, 2016
Post category:Rare Disease

I woke up bright and early last Monday in Bethesda, Maryland. As soon as my eyes were open I was excited...I'd be spending Rare Disease Day at NIH. I…

Last Day to Register for Acromegaly.care Webinar!

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

Acromegaly.care is bringing the patient community a webinar tomorrow March 16 12:00 – 12:30 p.m. EST. What is the Webinar About? How to manage acromegaly as a chronic condition, including coping mechanisms and key…

How to Get Your Narcolepsy College Scholarship Award

Post author:Alisha Stone
Post published:March 15, 2016
Post category:Narcolepsy Rare Disease Timely

I first wrote about Julie Flygare back in 2015 and it’s awesome to hear that she’s as committed as ever to advancing the cause of raising awareness about narcolepsy. I got the recent scoop…

Are YOU Listening? What to Know About Chronic Pain in Kids

Post author:Winnie Nash
Post published:March 15, 2016
Post category:Complex Regional Pain Syndrome Rare Disease

Kids. They may not be known as the most trustworthy of folk, but more and more people are saying it’s imperative to believe kids, especially when they say they’re in…

Una confesión de vacaciones: Haciendo que las Excepciones sean la Regla Parte 1

Post author:Patient Worthy Contributor
Post published:March 15, 2016
Post category:Ehlers-Danlos Syndrome Rare Disease

Pastel de calabaza, galletas de jengibre, pan, bastones de caramelo, y chocolates. ¡Oh, qué dulce estación! Hace mis hijos unas cuantas noches y yo pasamos un par de horas agazapados…

Rare Disease Lobby Day on Capitol Hill

Post author:Rebekah
Post published:March 14, 2016
Post category:Rare Disease

Wednesday of Rare Disease Week was Lobby Day! Patients, parents and advocates "stormed Capitol Hill" after a Lobby Day breakfast with speakers that included the newly confirmed FDA Commissioner, Robert M.…

A Guide to Rare Disease Organizations

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

So for those of you out there living with a rare disease, I am sure that you are very well educated of all the government and non-government organizations that work…

Rare Artist at Rare Disease Week: Olivia and Her Drawing Triumphant Tiger

Post author:Kathy Devanny
Post published:March 14, 2016
Post category:primary ciliary dyskinesia Rare Disease

According to PW writer Kathy, there was a shining star at Rare Disease Week on Capitol Hill's Rare Artist Reception. Olivia is the youngest of four daughters. She was diagnosed…

It’s One Thing to Help Patients, but Something Else to Be One

Post author:James Ernest Cassady
Post published:March 14, 2016
Post category:Complex Regional Pain Syndrome Rare Disease

"His health may challenge him, but his mind and determination are as sharp as ever." For decades now, Doug Burr has been actively involved in healthcare policy, with a focus…

366 Talking Tips

You Want to Put What in Me? New Treatment for XSCID

Editor’s Note on Rare Disease Day NIH 2016

This Amazing Doctor Is a Hero Castleman Deserves

366 Talking Tips

Will People With Rare Diseases Be Exploited By Gene Modification?

Rare Disease Inspirational Memes – Shelly

Rare Disease Mom’s Inspirational Memes – Shelly

What to Do If You Suspect Your Coworker Has Narcolepsy?

Rare Disease Mom’s Inspirational Memes – Shelly

Este papá se detendrá ante nada para Su Hijo con fibrosis quística

Rare Disease Mom’s Inspirational Memes – Shelly

Can Bee Pollen Actually Help Recovery From Disease Treatment?

Rare Disease Mom’s Inspirational Memes – Shelly

Rare Disease Mom’s inspirational memes – Shelly

Do You Know What To Do When Syncope Strikes?

Rare Disease Day Highlights

Last Day to Register for Acromegaly.care Webinar!

How to Get Your Narcolepsy College Scholarship Award

Are YOU Listening? What to Know About Chronic Pain in Kids

Una confesión de vacaciones: Haciendo que las Excepciones sean la Regla Parte 1

Rare Disease Lobby Day on Capitol Hill

Rare Artist at Rare Disease Week: Olivia and Her Drawing Triumphant Tiger

It’s One Thing to Help Patients, but Something Else to Be One

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!

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