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Daily Archives: November 4, 2016

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Editor’s Choice: Spoonie Love, Support Groups and Good News

Editor’s Choice: Spoonie Love, Support Groups and Good News

  • Post author:Patient Worthy Contributor
  • Post published:November 4, 2016
  • Post category:Behçet's/Complex Regional Pain Syndrome/Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

Happy Weekend Before the Election Patient Worthians! Get some rest, Tuesday is going to be a big one in the United States. But while you're hanging out, check out these…

Continue Reading Editor’s Choice: Spoonie Love, Support Groups and Good News
An Amazingly Simple Solution for Better Cystinosis Care

An Amazingly Simple Solution for Better Cystinosis Care

  • Post author:Erica Zahn
  • Post published:November 4, 2016
  • Post category:Cystinosis/Rare Disease

Cystinosis is a metabolic disease in which the amino acid cystine crystallizes and then begins to accumulate in the kidneys, eyes, liver, and white blood cells. Children are typically diagnosed…

Continue Reading An Amazingly Simple Solution for Better Cystinosis Care
What You Need to Do in an Emergency When You Have AS
Source: flickr.com

What You Need to Do in an Emergency When You Have AS

  • Post author:Farrah Fontaine
  • Post published:November 4, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

In the case of an emergency, we're all taught to dial 911. We all assume that the police, firemen, or EMTs will be able to help us. But what if…

Continue Reading What You Need to Do in an Emergency When You Have AS
How are Schools Failing Their Children with Crohn’s?
Source: pixabay.com

How are Schools Failing Their Children with Crohn’s?

  • Post author:Sabina Kennedy
  • Post published:November 4, 2016
  • Post category:pediatric ulcerative colitis/Rare Disease

It’s about one month into school starting and the morning routine is starting to feel and look all too familiar. A family scramble, and my voice echoes the same commands…

Continue Reading How are Schools Failing Their Children with Crohn’s?
November MDS Foundation Patient and Family Forum

November MDS Foundation Patient and Family Forum

  • Post author:Patient Worthy Contributor
  • Post published:November 4, 2016
  • Post category:Myelodysplastic syndromes

MDS Patient & Family Forum Miami, Florida November 12, 2016 9:30 am - 2:30 pm This Free Event is sponsored by The MDS Foundation, Inc. Topics to be covered include: Therapies and Patient…

Continue Reading November MDS Foundation Patient and Family Forum
Revealing a Bleeding Disorder: Informative, Not Frightening
Source: pixabay.com

Revealing a Bleeding Disorder: Informative, Not Frightening

  • Post author:PW Blogger
  • Post published:November 4, 2016
  • Post category:Rare Disease/Von Willebrand's Disease

First of all, many people have experienced a nose bleed at some point. A nose bleed is a very common annoyance for many. These people typically just brush it off as something…

Continue Reading Revealing a Bleeding Disorder: Informative, Not Frightening
Wonderful and Remarkable News for DMD Community
[Source: Pixabay.com]

Wonderful and Remarkable News for DMD Community

  • Post author:Sabina Kennedy
  • Post published:November 4, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

On the surface, it seems self-evident that social collaboration can have a positive impact--especially when it comes to Duchenne muscular dystrophy (DMD). Working together with all invested participants to influence…

Continue Reading Wonderful and Remarkable News for DMD Community
10 Shocking Symptoms of Addison’s Disease Will Save Your Life

10 Shocking Symptoms of Addison’s Disease Will Save Your Life

  • Post author:Alisha Stone
  • Post published:November 4, 2016
  • Post category:Addison's Disease/Rare Disease

I am completely BAFFLED About Addison’s disease! Are you?! You Should be! It’s Monday night, and I’m sitting—rather, lounging on the sofa, feeling baffled after reading a post from a…

Continue Reading 10 Shocking Symptoms of Addison’s Disease Will Save Your Life
Como un paseo por el zoológico ayudó a dos niñas con distonía

Como un paseo por el zoológico ayudó a dos niñas con distonía

  • Post author:Patient Worthy Contributor
  • Post published:November 4, 2016
  • Post category:Dystonia/Rare Disease

Para los padres de niños con distonía, que la frustración es una realidad horrible, en curso. Los padres como Melissa Phelps de Gallaten, Kentucky lo sabe muy bien hijas-Madison y…

Continue Reading Como un paseo por el zoológico ayudó a dos niñas con distonía

Featured


Picture of Family


Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


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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