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Chiari Malformation: Community Brings Christmas Parade to 7-Year-Old’s Door 
source: shutterstock.com

Chiari Malformation: Community Brings Christmas Parade to 7-Year-Old’s Door 

  • Post author:James Moore
  • Post published:December 25, 2023
  • Post category:Chiari Malformation/Syringomyelia

By Danielle Bradshaw from In the Cloud Copy For the streets of downtown Wylie, Texas, Christmas came twice. It was only a week after the town threw their yearly Christmas…

Continue Reading Chiari Malformation: Community Brings Christmas Parade to 7-Year-Old’s Door 
Operation North Pole Brings Christmas to Children with Rare Diseases
Source: Pixabay

Operation North Pole Brings Christmas to Children with Rare Diseases

  • Post author:James Moore
  • Post published:December 19, 2023
  • Post category:VACTERL Association

Most people view Christmas as a time for celebrating. Spending time with family and getting out to festive events and parties can be cornerstones of the holiday. For children like…

Continue Reading Operation North Pole Brings Christmas to Children with Rare Diseases
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
Santa Visits Girl with Ataxia-Telangiectasia
Source: Pixabay

Santa Visits Girl with Ataxia-Telangiectasia

  • Post author:Kendall Mason
  • Post published:January 11, 2021
  • Post category:Ataxia-telangiectasia

The COVID-19 pandemic has been difficult for everyone; we've all had to make changes to our lives because of it. Some of us have had to make bigger changes than…

Continue Reading Santa Visits Girl with Ataxia-Telangiectasia
Community Brings Christmas Parade to 7-Year-Old Girl’s Door 
Source: Pixabay

Community Brings Christmas Parade to 7-Year-Old Girl’s Door 

  • Post author:Patient Worthy Contributor
  • Post published:December 18, 2020
  • Post category:Chiari Malformation/Rare Disease/Syringomyelia

By Danielle Bradshaw from In the Cloud Copy For the streets of downtown Wylie, Texas, Christmas came twice. It was only a week after the town threw their yearly Christmas…

Continue Reading Community Brings Christmas Parade to 7-Year-Old Girl’s Door 
A Batten’s Disease Flair Up Took Their Christmas Spirit. Their Small Town Gave It Back.

A Batten’s Disease Flair Up Took Their Christmas Spirit. Their Small Town Gave It Back.

  • Post author:Sunniva Bean
  • Post published:December 17, 2020
  • Post category:Batten Disease

As originally reported in the BBC; In Leyland, Lancashire, Mother Melanie Moffatt describes feeling miserable on Christmas. She was spending it alone with her 10 year old daughter Matilda who…

Continue Reading A Batten’s Disease Flair Up Took Their Christmas Spirit. Their Small Town Gave It Back.
Watch Elaborate Christmas Lights Display in Honor of Two Girls Battling Rare Bone Disease 
Source: Pixabay

Watch Elaborate Christmas Lights Display in Honor of Two Girls Battling Rare Bone Disease 

  • Post author:Jean Martell
  • Post published:December 19, 2018
  • Post category:Osteogenesis Imperfecta

Watch this and try NOT to get into the Christmas/holiday spirit! What makes this even better is that this annual Christmas lights display is put on to help raise money…

Continue Reading Watch Elaborate Christmas Lights Display in Honor of Two Girls Battling Rare Bone Disease 
You Can Help a Young Girl Fighting SMA Get Her Christmas Wish 
Source: Pixabay.com

You Can Help a Young Girl Fighting SMA Get Her Christmas Wish 

  • Post author:Jean Martell
  • Post published:December 14, 2018
  • Post category:Spinal Muscular Atrophy

Who's in the mood to help grant a young girl her Christmas wish this year?! People who know 10-year-old Paola Vega describe her as a cute, spunky princess who can't…

Continue Reading You Can Help a Young Girl Fighting SMA Get Her Christmas Wish 
Michael Bublé is Back to Making Music Following Son’s Liver Cancer Remission 
Source: Pixabay.com

Michael Bublé is Back to Making Music Following Son’s Liver Cancer Remission 

  • Post author:Jean Martell
  • Post published:December 11, 2018
  • Post category:Rare Disease

The holiday season is upon us, and nothing says holiday cheer more than the smooth and sultry sounds of Michael Bublé singing Christmas tunes. In fact, Michael Bublé has been promoting…

Continue Reading Michael Bublé is Back to Making Music Following Son’s Liver Cancer Remission 
Operation North Pole Brings Christmas to Children with Rare Diseases
Source: Pixabay

Operation North Pole Brings Christmas to Children with Rare Diseases

  • Post author:Samuel Sachs
  • Post published:December 25, 2017
  • Post category:VACTERL Association

Most people view Christmas as a time for celebrating. Spending time with family, and getting out to festive events and parties can be cornerstones of the holiday. For children like…

Continue Reading Operation North Pole Brings Christmas to Children with Rare Diseases
Send Your Holiday Cheer to Cancer Patient
Source: Pixabay

Send Your Holiday Cheer to Cancer Patient

  • Post author:Andres Rovira
  • Post published:November 13, 2017
  • Post category:Neuroblastoma

It's been on ongoing cancerous battle for nine-year-old Jacob Thompson. Ever since he was 5, he's been dueling his rare neuroblastoma. And after the treatment failed, the cancer has spread…

Continue Reading Send Your Holiday Cheer to Cancer Patient
Happy Christmahanakwanzika to All!

Happy Christmahanakwanzika to All!

  • Post author:Kristen Lord
  • Post published:December 23, 2016
  • Post category:Rare Disease

Yes, it is the season of holidays. Happy Christmahanakwanzika! Or whichever holiday you celebrate! I hope you experience peace, love and joy this season.

Continue Reading Happy Christmahanakwanzika to All!
A Charitable Holiday

A Charitable Holiday

  • Post author:Kristen Lord
  • Post published:December 22, 2016
  • Post category:Rare Disease

If this holiday season finds you with extra love to share, then I hope can share a little bit to help fund research for a rare disease so that others…

Continue Reading A Charitable Holiday
She Did What? Pulmonary Fibrosis Patient Spreads Hope
Source: Pexels.com

She Did What? Pulmonary Fibrosis Patient Spreads Hope

  • Post author:Sabina Kennedy
  • Post published:December 22, 2016
  • Post category:Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

’Tis the season to indulge in the spirit of giving. And that’s Kim Fredrickson's exact intention. Kim is an author, blogger, and marriage & family therapist who was diagnosed with…

Continue Reading She Did What? Pulmonary Fibrosis Patient Spreads Hope
Holidays Are Not for Pulling Out Your Hair

Holidays Are Not for Pulling Out Your Hair

  • Post author:Kristen Lord
  • Post published:December 19, 2016
  • Post category:Rare Disease

Happy Holidays! Many people spend their time running around trying to bake as much as they can, buy and wrap as many presents as they can, go to as many…

Continue Reading Holidays Are Not for Pulling Out Your Hair
Meme Monday: We Keep it P.C. for Christmas (oops)

Meme Monday: We Keep it P.C. for Christmas (oops)

  • Post author:Rebekah
  • Post published:December 21, 2015
  • Post category:Rare Disease

Although it is often called the "Most Wonderful Time of the Year", people can get pretty up-in-arms about holiday lingo and traditions. If you don't believe us, just ask Starbucks...…

Continue Reading Meme Monday: We Keep it P.C. for Christmas (oops)

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