Fighting FH and LDL Cholesterol with Valuable New Drug
https://pixabay.com/en/dollar-money-currency-trade-1974694/

Fighting FH and LDL Cholesterol with Valuable New Drug

We’ve all heard the expression, “Beauty is in the eye of the beholder.” How about another cliché? “One man’s trash is another man’s treasure.” These trite statements do, in fact,…

Continue Reading Fighting FH and LDL Cholesterol with Valuable New Drug
Great News for the HD Community: A New Treatment is Approved!
https://pixabay.com/en/thumbs-up-okay-good-well-done-2056022/

Great News for the HD Community: A New Treatment is Approved!

More than 35,000 Americans suffer from Huntington's disease (HD), a neurodegenerative disease. Eventually, HD destroys a person's ability to walk, talk, swallow, or have meaningful relationships with friends and family. Chorea is…

Continue Reading Great News for the HD Community: A New Treatment is Approved!
Researchers Discover a Link Between Sjogren’s Disease and Rheumatoid Arthritis
https://pixabay.com/en/string-link-steel-force-expression-823252/

Researchers Discover a Link Between Sjogren’s Disease and Rheumatoid Arthritis

There are four million people in the United States walking around with Sjogren’s disease, and nine out of 10 of them are women. This autoimmune disease affects the entire body…

Continue Reading Researchers Discover a Link Between Sjogren’s Disease and Rheumatoid Arthritis
Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood
https://pixabay.com/en/shoes-relax-teenager-shoes-828414/

Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood

Maya Doyle of Quinnipiac University and Allison Werner-Lin of the University of Pennsylvania conducted a scientific research study to understand the experience of adults and emerging adults living with cystinosis. There…

Continue Reading Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood

Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval

Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…

Continue Reading Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval
When Balancing Treatment and Side Effects Feels Like Walking a Tightrope
https://pixabay.com/en/violinist-tightrope-walker-clown-735413/

When Balancing Treatment and Side Effects Feels Like Walking a Tightrope

Life is a balancing act. We need to balance our responsibilities with our desires. We need to balance work lives with personal lives. Our balancing acts aren’t as dire as…

Continue Reading When Balancing Treatment and Side Effects Feels Like Walking a Tightrope
Parenting a Child with Friedrich’s Ataxia? Here’s a Resource for You
https://pixabay.com/en/mom-daughter-son-relationship-2208928/

Parenting a Child with Friedrich’s Ataxia? Here’s a Resource for You

Having a difficult time finding resources on Friedreich's ataxia (FRDA)? Even for the generation that grew up with Google, keeping up with the news online can be tricky. You’ve got…

Continue Reading Parenting a Child with Friedrich’s Ataxia? Here’s a Resource for You
Are You Ready for NCATS Advocacy Day?: Partnering with Patients for Smarter Science
https://pixabay.com/en/audience-speech-speaker-1677028/

Are You Ready for NCATS Advocacy Day?: Partnering with Patients for Smarter Science

National Center for Advancing Translational Sciences (NCATS) is a division of the NIH, located in Bethesda MD. On Friday June 30th they will have  an all day program to discuss…

Continue Reading Are You Ready for NCATS Advocacy Day?: Partnering with Patients for Smarter Science