You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

**IMPORTANT**

The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Myrovlytis Trust

a/k/a: MT

Address

26 Cadogan Square
London, SW1X 0JP
United Kingdom

Phone

440-207-0520088

Email Address

contact@myrovlytistrust.org

Website

http://www.myrovlytistrust.org

The Myrovlytis Trust is a UK based, non-profit charity that promotes research into rare genetic disorders, and advances education of the public in medical and molecular genetics. The Trust funds basic scientific and medical research into Birt-Hogg-Dubé (BHD) syndrome. Several projects are currently being funded in university laboratories around the world, including projects ranging from cell biology to renal gene therapy. The Trust has also created and maintains www.BHDSyndrome.org (in collaboration with the BHD Family Alliance), the primary online resource for anyone interested in BHD syndrome. BHD syndrome is a rare complex genetic skin disorder (genodermatosis) characterized by the development of benign skin tumors (hamartomas) affecting the head, face and upper torso. These benign tumors are fibrofolliculomas, tumors of the hair follicles. BHD syndrome also predisposed individuals to the development of benign cysts in the lungs, repeated episodes of a collapsed lung (pneumothorax), and increased risk for developing renal neoplasia. BHD syndrome is caused by mutations in the BHD gene and is inherited as an autosomal dominant trait.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .