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Rare Disease Week 2022: I Am Limitless
source: pixabay.com

Rare Disease Week 2022: I Am Limitless

  • Post author:Patient Worthy Contributor
  • Post published:February 22, 2022
  • Post category:Moebius Syndrome

Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…

Continue Reading Rare Disease Week 2022: I Am Limitless
Rare Disease Week 2022: Teen with FSHD is in top 40 of Science Talent Search
source: pixabay.com

Rare Disease Week 2022: Teen with FSHD is in top 40 of Science Talent Search

  • Post author:Patient Worthy Contributor
  • Post published:February 21, 2022
  • Post category:Facioscapulohumeral muscular dystrophy 1a

Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…

Continue Reading Rare Disease Week 2022: Teen with FSHD is in top 40 of Science Talent Search
Interview: Living a Full and Filling Life with Late-Onset Tay-Sachs (LOTS) Pt. 1
Stewart and Lorrie Altman

Interview: Living a Full and Filling Life with Late-Onset Tay-Sachs (LOTS) Pt. 1

  • Post author:Jessica Lynn
  • Post published:February 21, 2022
  • Post category:Tay-Sachs Disease

48 years of marriage, 2 children, 2 nephews, 7 grandchildren, and 3 great-nieces. It is clear that Lorrie and Stewart Altman, over their time together, have created a beautiful life.…

Continue Reading Interview: Living a Full and Filling Life with Late-Onset Tay-Sachs (LOTS) Pt. 1
Mark Hoppus is Back to Music After His Diffuse Large B-Cell Lymphoma Battle
source: pixabay.com

Mark Hoppus is Back to Music After His Diffuse Large B-Cell Lymphoma Battle

  • Post author:Kendall Mason
  • Post published:February 18, 2022
  • Post category:Diffuse Large B-cell Lymphoma

Mark Hoppus has been working in the music industry for three decades; his band, Blink 182, was formed back in 1992. He has a strong love for writing, performing, and…

Continue Reading Mark Hoppus is Back to Music After His Diffuse Large B-Cell Lymphoma Battle
Hockey Player Discusses Life, Recovery with FAP
Source: Pixabay

Hockey Player Discusses Life, Recovery with FAP

  • Post author:Jessica Lynn
  • Post published:February 17, 2022
  • Post category:Familial Adenomatous Polyposis

  When Sam Anderson was thirteen years old, he was diagnosed with familial adenomatous polyposis (FAP), a rare inherited disorder. As he grappled with his diagnosis and symptoms, Sam also…

Continue Reading Hockey Player Discusses Life, Recovery with FAP
‘Donegal Amy’ Film Shines Light on Hereditary Amyloidosis
Source: Pixabay

‘Donegal Amy’ Film Shines Light on Hereditary Amyloidosis

  • Post author:Alyssa Stevens
  • Post published:November 12, 2021
  • Post category:Hereditary ATTR Amyloidosis

According to a recent article from Donegal Daily, patients with hereditary amyloidosis in Donegal, Ireland created a film on the condition that has been plaguing parts of Ireland for ages.…

Continue Reading ‘Donegal Amy’ Film Shines Light on Hereditary Amyloidosis
Disabled Journalists Have to Fight to Get into Newsrooms
source: pixabay.com

Disabled Journalists Have to Fight to Get into Newsrooms

  • Post author:Alyssa Stevens
  • Post published:November 12, 2021
  • Post category:COVID-19/Keratoconus/Rare Disease

In a recent article by Bailey Martens, she describes the struggles she and others have faced being disabled as journalists and brings light to the importance of accessibility in the…

Continue Reading Disabled Journalists Have to Fight to Get into Newsrooms
Four Young Boys Diagnosed with A Rare Disease So New It Was Given A Number And Not a Name

Four Young Boys Diagnosed with A Rare Disease So New It Was Given A Number And Not a Name

  • Post author:Rose Duesterwald
  • Post published:November 1, 2021
  • Post category:Rare Disease

According to a recent article in Yahoo News, unless treatment is discovered or a cure is found for a disorder called IRF2BPL, these young children will lose the ability to…

Continue Reading Four Young Boys Diagnosed with A Rare Disease So New It Was Given A Number And Not a Name
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