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December 15, 2015

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

CCHS Family Network

Posted at December 12, 2015 09:47 am by Lisa Sencen

The CCHS Family Network (CCHSFN) is a voluntary, non-profit, self-help organization dedicated to providing support and information to families with children affected by congenital central hypoventilation syndrome. Congenital central hypoventilation syndrome is a rare neurological disorder of infancy and childhood characterized by a decrease in respiratory function during sleep. Established in 1989, the CCHS Family Support Network consists of… Read More

December 7, 2015

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

Pachyonychia Congenita Project

Posted at December 12, 2015 03:53 pm by Lisa Sencen
  1. What does it mean to you personally to be a patient organization serving the rare community? It is all about love. With a disease as rare as Pachyonychia Congenita, patients feel alone and often scared. Others around them do not understand the pain that they are dealing with while trying to live a normal life.  We are glad that… Read More

December 1, 2015

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

Joshua Frase Foundation

Posted at December 12, 2015 03:08 pm by Lisa Sencen
The Joshua Frase Foundation (JFF) is a non-profit organization whose mission is to support ongoing medical research in hopes of finding a cure for myotubular myopathy. JFF also provides monetary and emotional support to families who are affected by congenital myopathies. Myotubular myopathy is a rare muscle-wasting disorder that occurs in three forms based on severity, inheritance, and symptoms…. Read More

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