Editor’s Choice: Don’t Passover This Batten Disease Petition or Our Q&A with the NIH

Editor’s Choice: Don’t Passover This Batten Disease Petition or Our Q&A with the NIH

We hope that everybody is having a great Easter, Passover, or first taste of spring!

This week we have a story about sisters with Batten disease who are finally being treated in the same hospital– and a petition you can sign to help them out. We also have a two part interview with the NIH and 13 weird clues that you might have Ehlers-Danlos syndrome.

Sit back and enjoy this week’s Editor’s Choice.

These Sisters With Batten Disease Are Finally Getting Treated at the Same Hospital

We are so happy to learn that these sisters with Batten disease, who inspired the Nicole Rich Foundation, have finally been reunited!

Check out the adorable pictures and sign the petition helping out Batten disease patients in the UK here.

NIH Breaks Down Rare Research Funding Prioritization

Have you ever wondered how the NIH decided which research projects to fund? We asked the NIH, and they explained the process and sent resources our way.

Check it out here.



NIH Discusses How Rare Advocacy Groups Can Fund Research and Answers More Questions

It’s important that advocacy groups and the NIH are able to work together to promote rare research– here’s some insight about the NIH process.

View part 2 of our Q&A here.


13 Ehlers-Danlos Syndrome Clues I Missed

What do bendy eyeballs and a weird elementary school talent show performance have in common? More than you might think.

Read about it here.


Do you have a rare disease experience of your own? Share with us here.

Have something to say? Comment here...

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

© Copyright Patient Worthy

Close Menu