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Archives for: November 23rd, 2015

National Brain Tumor Society

Written by Lisa Sencen on November 23, 2015
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,… Read More

Cutis Laxa Internationale

Written by Lisa Sencen on November 16, 2015

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… Read More


Written by Lisa Sencen on November 9, 2015

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… Read More

Neuroendocrine Tumor Research Foundation

Written by Lisa Sencen on October 26, 2015

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… Read More

Rett Syndrome Research Trust

Written by Lisa Sencen on October 19, 2015

This week’s member spotlight was written by:
Monica Coenraads, Co-Founder, Trustee, and Executive Director of Rett Syndrome Research Trust.


“October is Rett Syndrome Awareness Month. This October also happens to be the seven-year anniversary of the launch of the Rett Syndrome Research Trust, a non-profit I started to spur research to… Read More