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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
The National Brain Tumor Society (NBTS) is a non-profit organization whose mission is to inspire hope and provide leadership within the brain tumor community. They seek to find a cure and improve the quality of life for those affected by brain tumors. NBTS funds strategic research, delivers support services, and promotes collaboration. NBTS was formed in 2008 by… Read More

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