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Daily Archives: February 24, 2017

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Editor’s Choice: Rare Diseasing with Exercise and Dogs

Editor’s Choice: Rare Diseasing with Exercise and Dogs

  • Post author:Patient Worthy Contributor
  • Post published:February 24, 2017
  • Post category:Cystic Fibrosis/Idiopathic Pulmonary Fibrosis/IPF/mastocytosis/Pfeiffer Syndrome/Rare Disease

Get informed and gear up for Rare Disease Week this Monday! Start with our Editor's Choice. This week we have a sweet story about a pup and how he helps…

Continue Reading Editor’s Choice: Rare Diseasing with Exercise and Dogs
CRF Grants Support the Quest for a Cure

CRF Grants Support the Quest for a Cure

  • Post author:Patient Worthy Contributor
  • Post published:February 24, 2017
  • Post category:Cystinosis/Timely

The Cystinosis Research Foundation is the largest provider of grants for cystinosis research. When we say largest we don't mean in the country, we mean in the world. In fact,…

Continue Reading CRF Grants Support the Quest for a Cure
New Hope for Cystinosis in Organ Donation Crisis

New Hope for Cystinosis in Organ Donation Crisis

  • Post author:Al Pendleton
  • Post published:February 24, 2017
  • Post category:Cystinosis/Rare Disease

If you’ve ever known someone waiting for an organ transplant, then you know what it’s like. They walk around with a beeper like a high school senior waits by the…

Continue Reading New Hope for Cystinosis in Organ Donation Crisis
Insane Price Tag of Life-Changing Treatment
[Source: pixabay.com]

Insane Price Tag of Life-Changing Treatment

  • Post author:Al Pendleton
  • Post published:February 24, 2017
  • Post category:MPS IV (Morquio syndrome)/Rare Disease

What would you do if you had a medical condition that required treatment that costs thousands of dollars a week? If nothing else, you’d reach your deductible in the first…

Continue Reading Insane Price Tag of Life-Changing Treatment
This April, You Can Learn the Latest in Endocrine Science!
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This April, You Can Learn the Latest in Endocrine Science!

  • Post author:Patient Worthy Contributor
  • Post published:February 24, 2017
  • Post category:Addison's Disease/Cushing Disease/Rare Disease

The Endocrine Society's Endo 2017 is the world's largest endocrine science presentation. Attendees will be able to network, learn about the newest product and technology updates, listen to thought-leaders, and…

Continue Reading This April, You Can Learn the Latest in Endocrine Science!
Register Today for the MDA Scientific Conference
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Register Today for the MDA Scientific Conference

  • Post author:Patient Worthy Contributor
  • Post published:February 24, 2017
  • Post category:Muscular Dystrophy/Rare Disease

The Muscular Dystrophy Association's Scientific Conference Registration closes February 28th! This event brings all the important players together in the Muscular Dystrophy world to promote research around management, treatment and…

Continue Reading Register Today for the MDA Scientific Conference
¿Cuáles son las luchas invisibles de la enfermedad invisible?

¿Cuáles son las luchas invisibles de la enfermedad invisible?

  • Post author:Jean Martell
  • Post published:February 24, 2017
  • Post category:Español/Rare Disease

"Estoy cansado de morir y temo que estaré muriendo por el resto de mi vida". Esta es una verdad poderosa para cualquier persona que trate día a día con una…

Continue Reading ¿Cuáles son las luchas invisibles de la enfermedad invisible?

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