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Daily Archives: July 12, 2016

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Do You Remember The ALS Ice Bucket Challenge?

Do You Remember The ALS Ice Bucket Challenge?

  • Post author:Kristen Lord
  • Post published:July 12, 2016
  • Post category:Amyotrophic Lateral Sclerosis/Rare Disease

You may not recognize what ALS (Amyotrophic lateral sclerosis) is, you may recognize it as Lou Gherig's Disease, or that disease that Stephen Hawking has. It is a terrible disease that…

Continue Reading Do You Remember The ALS Ice Bucket Challenge?
More Rare Than Shakespeare’s Signature? – Fibrinogen Deficiency

More Rare Than Shakespeare’s Signature? – Fibrinogen Deficiency

  • Post author:Kristen Lord
  • Post published:July 12, 2016
  • Post category:Fibrinogen deficiency/Rare Disease

You may not know this but Shakespeare's signature is super rare, there are only six known authentic signatures of his in the world. You know what else is rare? People…

Continue Reading More Rare Than Shakespeare’s Signature? – Fibrinogen Deficiency
How to Be the Ultimate Lyme Warrior

How to Be the Ultimate Lyme Warrior

  • Post author:Patient Worthy Contributor
  • Post published:July 12, 2016
  • Post category:Lyme Disease/Rare Disease

A lot of us fight Lyme the only ways that are available to us, be it antibiotics, homepathy or other alternative routes. However, when a kid has chronic Lyme, he…

Continue Reading How to Be the Ultimate Lyme Warrior
What Keeps You Going Despite Your Disease?

What Keeps You Going Despite Your Disease?

  • Post author:Rebekah
  • Post published:July 12, 2016
  • Post category:Rare Disease

With chronic illness, rare disease, and life in general, there are always going to be rough patches where you start to lose hope. It's impossible to keep a positive, upbeat…

Continue Reading What Keeps You Going Despite Your Disease?
Who is the TV Star with MPGN Who Beats Eggs and Odds?

Who is the TV Star with MPGN Who Beats Eggs and Odds?

  • Post author:PW Blogger
  • Post published:July 12, 2016
  • Post category:Glomerulonephritis

Maeve Rochford was once told she only had two years to live—nearly two decades ago. Maeve was diagnosed with membranoproliferative glomerulonephritis (MPGN), a kidney disorder, when she was 19. She is no stranger to…

Continue Reading Who is the TV Star with MPGN Who Beats Eggs and Odds?
The Remarkable Destiny for ALS: Virtual Reality

The Remarkable Destiny for ALS: Virtual Reality

  • Post author:PW Blogger
  • Post published:July 12, 2016
  • Post category:Amyotrophic Lateral Sclerosis/Rare Disease

Wow! This is a pretty cool invention to help make life a little easier for people with disabilities. A start-up company called Neurable is working on a technology called BCI,…

Continue Reading The Remarkable Destiny for ALS: Virtual Reality
Como salvar una vida: done sangre!

Como salvar una vida: done sangre!

  • Post author:Patient Worthy Contributor
  • Post published:July 12, 2016
  • Post category:CVID/Rare Disease

  Mamá cualquiera entrega el don extraordinario de la Vida Brookwater, Australia. Corinne Heapy, es una dedicada madre de dos hijos, sabe de primera mano, lo que es dar el…

Continue Reading Como salvar una vida: done sangre!

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