About Rare Disease Resources
BROWSE RESPONSIBLY
A NOTE FROM THE CREATOR
A NOTE FROM THE CREATOR
There are no major rules or guidelines that determine what may be included here - there just needs to be a connection to rare disease! As you browse, do so in the same way you would if you were just searching for key words on your own out there on the web. Browse responsibly. There is no hidden agenda here and inclusion is not meant to be a personal endorsement.
A NOTE FROM THE CREATOR
A NOTE FROM THE CREATOR
A NOTE FROM THE CREATOR
Hi - I am Laura McLinn, a rare disease mom who knows just how valuable time and resources are. My son is living with a rare disease - Duchenne muscular dystrophy. This is a personal project, not tied to any organization or funding. I am the one behind the keyboard, but this is actually a collection of resources submitted by many amazing
Hi - I am Laura McLinn, a rare disease mom who knows just how valuable time and resources are. My son is living with a rare disease - Duchenne muscular dystrophy. This is a personal project, not tied to any organization or funding. I am the one behind the keyboard, but this is actually a collection of resources submitted by many amazing unnamed individuals! You might find mistakes (let me know but please give me grace) and you might think there is a better way to organize the information. Just know this is a project of passion with hopes it can help others. It is also designed to save us all some time - one of our most precious resources.
SHARE, LEARN & GROW
A NOTE FROM THE CREATOR
SHARE, LEARN & GROW
This site is an evolving project that will continue to grow! It is designed to be a home for links to existing resources, organized in a way to make it easy to navigate a variety of topics related to rare disease. Help grow this site by sharing resources that may be helpful for anyone living with or just having an interest in rare disease!