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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

October 22, 2015

TOPIC: Featured News, Advocacy, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Sticky Posts for Industry, Sticky Posts for Advocate, Get Involved

NORD Releases First-Ever State Progress Report for Rare Diseases

Posted at October 10, 2015 03:00 pm by Jennifer Huron

Leading Advocacy Organization Drives Health Policy Improvements for 30 Million Americans with Rare Diseases through Rare Action™ Network

With patient access to health care becoming increasingly dependent upon state policies, the National Organization for Rare Disorders (NORD)® has developed and released the first-ever State Progress Report to evaluate how states are serving the 30 million Americans with rare… Read More

October 19, 2015

TOPIC: Featured News, Research, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Get Involved

Rett Syndrome Research Trust

Posted at October 10, 2015 12:58 pm by Lisa Sencen

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 a new phase where it will have an impact… Read More