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Daily Archives: September 13, 2017

Home » Archives for September 13, 2017
The PI Mom Secrets You Never Knew
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The PI Mom Secrets You Never Knew

  • Post author:Sabina Kennedy
  • Post published:September 13, 2017
  • Post category:Primary Immunodeficiencies/Rare Disease

No one likes being sick, yet Mom always finds a way to turn this rough situation into a special feeling. Mothers have a way of taking care of you physically…

Continue Reading The PI Mom Secrets You Never Knew
Three Helpful Tips for Thriving with Phenylketonuria
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Three Helpful Tips for Thriving with Phenylketonuria

  • Post author:Octavia Walker
  • Post published:September 13, 2017
  • Post category:Phenylketonuria/Rare Disease

Recently on Recombine, a website dedicated to providing up-to-date blog posts about planning a healthy family, a story popped up from a young woman sharing her experiences about being a…

Continue Reading Three Helpful Tips for Thriving with Phenylketonuria
Hurry! Registration Still Open for North American Cystic Fibrosis Conference
[Source: pixabay.com]

Hurry! Registration Still Open for North American Cystic Fibrosis Conference

  • Post author:Lyssé Morganette
  • Post published:September 13, 2017
  • Post category:Cystic Fibrosis

The clock is ticking to sign up for this big conference! Thousands are expected to flood the convention halls at the North American Cystic Fibrosis Conference (NACFC) this November. Indianapolis,…

Continue Reading Hurry! Registration Still Open for North American Cystic Fibrosis Conference
Mono Virus Linked to Increased Risk of Multiple Sclerosis
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Mono Virus Linked to Increased Risk of Multiple Sclerosis

  • Post author:Patient Worthy Contributor
  • Post published:September 13, 2017
  • Post category:Multiple Sclerosis/Rare Disease

Everyone seems to have Epstein-Barr in my family. My mom, who has celiac disease and sciatica, and my sister, who has lichen sclerosis. Given that typical MDs don't seem to have…

Continue Reading Mono Virus Linked to Increased Risk of Multiple Sclerosis
Sickle Cell Disease Awareness Month Brings Hope to Millions
[Source: pixabay.com]

Sickle Cell Disease Awareness Month Brings Hope to Millions

  • Post author:Minden Cantrell
  • Post published:September 13, 2017
  • Post category:Rare Disease/Sickle cell anemia

In 1973, the lifespan of a person with sickle cell disease (SCD) in the U.S. was only 14 years. Thanks to the dauntless efforts of researchers, scientists, and clinicians, today…

Continue Reading Sickle Cell Disease Awareness Month Brings Hope to Millions
A Rare Disease Conference is the Best Medicine to Overcome Loneliness
Source: Pixabay

A Rare Disease Conference is the Best Medicine to Overcome Loneliness

  • Post author:Patient Worthy Contributor
  • Post published:September 13, 2017
  • Post category:Mucolipidosis Type III/Rare Disease

It can be pretty difficult to live in a world where very few people understand your rare disease life. Thankfully, there is a way to find others through the internet,…

Continue Reading A Rare Disease Conference is the Best Medicine to Overcome Loneliness
Senate Overwhelmingly Passes An Underwhelming Health Care Drug Bill
Source: Pixabay

Senate Overwhelmingly Passes An Underwhelming Health Care Drug Bill

  • Post author:Jean Martell
  • Post published:September 13, 2017
  • Post category:Rare Disease

It's been a tough year for the United States Congress and healthcare legislation - you might have heard, they failed to repeal and replace the Affordable Care Act nor have…

Continue Reading Senate Overwhelmingly Passes An Underwhelming Health Care Drug Bill

OF INTEREST


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DIVERSE VOICES


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


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We Need Equity and Diversity Within Rare Disease Research


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


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Bridging the Diversity Gap in Healthcare


Congratulations


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

Patient Stories

STUDY OF THE WEEK

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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RARE CLASSROOM

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most mysterious diseases and conditions. This series is an opportunity to learn the basics about some of the diseases that almost no one hears much about.

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