Community Builds Boy with Rare Disease a “Man Cave” to Recover from Surgeries

Post author:Jean Martell
Post published:July 12, 2019
Post category:Caudal regression syndrome

This is a great story about people coming together for a young boy with a rare disease, reported by a local tv news affiliate. Members of the Rhode Island State…

Get Involved

Read to get involved with Patient Worthy? Share your authentic story with others. Raise awareness and inspire change!

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!

Get Involved

Community Builds Boy with Rare Disease a “Man Cave” to Recover from Surgeries

Metastatic Breast Cancer: Navigating Grief

Rethinking What It Means to Live With Acromegaly

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

Get Involved

Let’s Work Together!

Keep Up to Date

Learn More