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Consider Rare Disease Families at Holiday Time
Source: Pixabay

Consider Rare Disease Families at Holiday Time

  • Post author:James Moore
  • Post published:December 27, 2023
  • Post category:MPS III (Sanfilippo Syndrome)/Mucolipidosis Type III

We often hear people talking about the stress they are feeling during the holidays, while those in the rare disease community silently think, "You have no idea!" During this season,…

Continue Reading Consider Rare Disease Families at Holiday Time
A Precious Gift for the Holiday Season
source: unsplash.com

A Precious Gift for the Holiday Season

  • Post author:Patient Worthy Contributor
  • Post published:December 23, 2022
  • Post category:Rare Disease

Written by Lisa Ann Krutzik An inexpensive and extremely valuable gift you can give your older teen or adult child this holiday season... A letter from you. I spend a…

Continue Reading A Precious Gift for the Holiday Season
Consider Rare Disease Families at Holiday Time
Source: Pixabay

Consider Rare Disease Families at Holiday Time

  • Post author:Denise Crompton
  • Post published:December 22, 2022
  • Post category:MPS III (Sanfilippo Syndrome)/Mucolipidosis Type III/Rare Disease

We often hear people talking about the stress they are feeling during the holidays, while those in the rare disease community silently think, "You have no idea!" During this season,…

Continue Reading Consider Rare Disease Families at Holiday Time
Thanksgiving Quotes We Can Use All Year Long
source: unsplash.com

Thanksgiving Quotes We Can Use All Year Long

  • Post author:Tom Seaman
  • Post published:November 23, 2022
  • Post category:Dystonia/Rare Disease

I love quotes. Some of them I read or hear and they go in one ear and out the other. Those that really resonate stick with me and help change…

Continue Reading Thanksgiving Quotes We Can Use All Year Long
Tips From The Vestibular Disorder Association For Handling The Holidays

Tips From The Vestibular Disorder Association For Handling The Holidays

  • Post author:Trudy Horsting
  • Post published:November 23, 2021
  • Post category:Vestibulocochlear dysfunction progressive familial

The Vestibular Disorder Association (VeDA) has just published a guide to handling the holidays when you are a vestibular patient. Holidays can be a challenge because of overstimulation, fatigue, high…

Continue Reading Tips From The Vestibular Disorder Association For Handling The Holidays
Boy with CMMRD Syndrome Gives Back for the Holidays
Source: www.pixabay.com

Boy with CMMRD Syndrome Gives Back for the Holidays

  • Post author:Kendall Mason
  • Post published:January 4, 2021
  • Post category:Rare Disease

Yash Cary knows what it's like to spend the holidays in the hospital. In fact, three of his last six Christmases have been at UNC Hospital. This is because Yash…

Continue Reading Boy with CMMRD Syndrome Gives Back for the Holidays
Consider Rare Disease Families at Holiday Time
Source: Pixabay

Consider Rare Disease Families at Holiday Time

  • Post author:Denise Crompton
  • Post published:November 23, 2020
  • Post category:MPS III (Sanfilippo Syndrome)/Mucolipidosis Type III/Rare Disease

We often hear people talking about the stress they are feeling during the holidays, while those in the rare disease community silently think, "You have no idea!" During this season,…

Continue Reading Consider Rare Disease Families at Holiday Time

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