November 23, 2015
TOPIC: Featured News, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families
National Brain Tumor Society
Posted at November 11, 2015 09:42 am by Lisa Sencen
November 16, 2015
TOPIC: Featured News, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families
Cutis Laxa Internationale
Posted at November 11, 2015 10:56 am by Lisa Sencen
The Cutis Laxa Internationale is a voluntary, non-profit association. They serve a worldwide audience with the mission of breaking the isolation of patients and families affected by cutis laxa, a rare genetic disorder of the connective tissue. Their specific activities include creating a bank of data to support research, raising funds for research, supporting patient networking, and providing information… Read More
November 9, 2015
TOPIC: Featured News, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families
CMTC-OVM
Posted at November 11, 2015 04:21 pm by Lisa Sencen
The CMTC-OVM is an organization based in The Netherlands that provides information and other services to those affected with, or working on, van Lohuizen syndrome, which is also known as cutis marmorata telangiectatica congenita (CMTC-OVM). On its web site and in its print materials, the organization provides information in English and German, as well as Dutch. CMTC-OVM, first described… Read More
November 2, 2015
TOPIC: Featured News, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families
The Guthy-Jackson Charitable Foundation
Posted at November 11, 2015 10:37 am by Lisa Sencen
OVERVIEW
The Guthy-Jackson Charitable Foundation (GJCF) is dedicated to funding basic science research to find answers that will lead to the prevention, clinical treatment programs and a potential cure for Neuromyelitis Optica Spectrum Disorder (NMO/NMOSD).
A rare orphan disease, individuals with NMO develop optic neuritis (ON), which causes pain in the eye and vision loss, and transverse… Read More
October 26, 2015
TOPIC: Featured News, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families
Neuroendocrine Tumor Research Foundation
Posted at October 10, 2015 11:53 am by Lisa Sencen
Our spotlgiht member this week is the Neuroendocrine Tumor Research Foundation, formerly known as the Caring for Carcinoid Foundation. Please see below the formal press release on thier re-branding initiative:
“The Caring for Carcinoid Foundation has become the Neuroendocrine Tumor Research Foundation! Our new name is more inclusive of all types of neuroendocrine cancer and better reflects the current medical… Read More
