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March 20, 2018

TOPIC: Advocacy, Featured News, Get Involved, Patients & Members, Press Releases, Sticky Posts for Patients and Families

NORD Rare Action Network® 2018 State Report Card

Posted at March 3, 2018 09:13 am by Christina Jensen
Washington, DC, March 20, 2018—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders Rare Action Network® (NORD RAN). The 2018 “State Report Card” indicates that progress in several areas of health policy… Read More

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 Phelps

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

February 13, 2017

TOPIC: Events, Featured News, Get Involved, Patients & Members, Sticky Posts for Patients and Families

Rare Disease Summer Family Camp: A Place to Call Home

Posted at February 2, 2017 04:44 pm by Christina Jensen

NORD is pleased to be working with The Hole in the Wall Gang Camp again this year to host the second-ever rare disease summer family camp, June 1-4 in Ashford, Connecticut. For the second year, they will be hosting a special Summer Family Camp for children and families impacted by rare diseases to join together for a weekend of… Read More

December 28, 2015

TOPIC: Featured News, Sticky Posts for Patients and Families

Cure HHT Foundation

Posted at December 12, 2015 03:07 pm by Christina Jensen

The Cure HHT Foundation, is a non-profit organization dedicated to increasing public and professional awareness and understanding of hereditary hemorrhagic telangiectasia (HHT), also known as Osler Weber Rendu syndrome. This is an inherited vascular (blood vessel) disorder characterized by direct connections between arteries and veins with no intervening capillaries, or by the dilation of small vessels. These telangiectases occur… 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 Christina Jensen

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