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October 26, 2017

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

NORD Releases New Documentary called “Good Morning Peyton”

Posted at October 10, 2017 12:03 pm by Lisa Sencen

View the full documentary.

Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is a reality. In a new documentary released today, see how the National Organization for Rare Disorders (NORD) partnered with Peyton’s hometown to turn one special… Read More

August 16, 2016

TOPIC: Research, Sticky Posts for Clinicians and Researchers, Sticky Posts for Industry, Sticky Posts for Patient Organizations

NORD Announces Research Grants Available for Study of Rare Diseases

Posted at August 8, 2016 09:46 am by Jennifer Huron

The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cures of rare diseases, has announced the availability of new research grants to study rare diseases. NORD’s 2016 research grant funding is available for the study of:

  • Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins – One (1) grant of up to… Read More

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, Get Involved, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families

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