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Daily Archives: March 15, 2016

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Can Bee Pollen Actually Help Recovery From Disease Treatment?

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…

Continue Reading Can Bee Pollen Actually Help Recovery From Disease Treatment?
Moving in the Right Direction, Hunting for a Movement Disorders Cure

Moving in the Right Direction, Hunting for a Movement Disorders Cure

  • Post author:Winnie Nash
  • Post published:March 15, 2016
  • Post category:Dystonia/Parkinson's Disease

The Dean of Student Affairs at the National Institutes of Health (NIH), Sandra LaBlance, has one thing to say about Rachel Hunt: “She will make a difference in the world.”…

Continue Reading Moving in the Right Direction, Hunting for a Movement Disorders Cure
Rare Disease Mom’s Inspirational Memes – Shelly

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...…

Continue Reading Rare Disease Mom’s Inspirational Memes – Shelly
Rare Disease Mom’s inspirational memes – Shelly

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…

Continue Reading Rare Disease Mom’s inspirational memes – Shelly
Do You Know What To Do When Syncope Strikes?

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…

Continue Reading Do You Know What To Do When Syncope Strikes?
Rare Disease Day Highlights

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…

Continue Reading Rare Disease Day Highlights
Last Day to Register for Acromegaly.care Webinar!

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…

Continue Reading Last Day to Register for Acromegaly.care Webinar!
How to Get Your Narcolepsy College Scholarship Award

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…

Continue Reading How to Get Your Narcolepsy College Scholarship Award
Are YOU Listening? What to Know About Chronic Pain in Kids

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…

Continue Reading Are YOU Listening? What to Know About Chronic Pain in Kids
Una confesión de vacaciones: Haciendo que las Excepciones sean la Regla Parte 1

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…

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

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Metastatic Breast Cancer: Navigating Grief


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Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


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

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