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Finding useful health information on the Internet can be difficult, but we’re here to help. This page gathers quality information from trusted sources. You can learn more about the disease, visit handpicked websites, and find resources to help you in your daily life. Need more information? Click the menu on the left to find more!

 

Rasmussen Johnsen Thomsen syndrome

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Overview

Type of Disease: Rare conditions Genetic, autosomal dominant

Trusted Medical Sites

Genetic & Rare Diseases Information Center (GARD) GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.

Support Organizations

Support organizations can provide help and guidance in areas such as peer matching, education and training, and therapy and counseling.

Disease Resources

Resources can help guide your quest for factual and reliable information.
Displaying 1-5 of 18 results.
VHL Alliance Newsletter
Added By: VHL Alliance
Added On: Jun 20, 2019
Category: General
The newsletter is designed to educate and empower patients and all those impacted by VHL. It is a critical piece of VHLA’s educational and support efforts.
VHL Alliance Blog
Added By: VHL Alliance
Added On: Jun 20, 2019
Category: Blogs
There are no true rules for the VHL journey. It is different for everyone. VHL impacts everyone, the VHLer and those who love the VHLer. Read how others are living through and thriving during their journey.
The VHL Handbook: What You Need to Know About VHL
Added By: VHL Alliance
Publish Date: Jun 20, 2019
Category: General
A reference handbook patients, caregivers and healthcare providers; it explains how VHL occurs, how to monitor and test for possible medical issues, and common treatment options to consider.
MdDS Friends Support Group on Facebook
Publish Date: Jun 14, 2019
Category: General
Please join over 3700 people living with Mal deDebarquement Syndrome for support and conversation.
Understanding Mal de Debarquement Syndrome (MdDS)
Publish Date: Jun 14, 2019
Category: General
Language(s): translator on website
Resource for people living with MdDS and those who support them including medical professionals can be found here.