To Top

August 26, 2015

TOPIC: Patient Stories

Giving Spotlight: Paula Mann Honors Son, Garrett, with Donation to NORD

Posted by Jennifer Huron

 “I really appreciate all that NORD does for those living and managing their lives with rare disorders.” -Paula Mann

Paula Mann is a mother of a boy, Garrett, born in 2008 with Mitochondrial Disease, a rare disease that can be present at birth or… Read More

August 24, 2015

TOPIC: Sticky Posts for Homepage, Sticky Posts for Patients and Families

Autoinflammatory Alliance

Posted by Christina Jensen
NORD-member-Autoinflammatory Alliance-Member Spotlight

The Autoinflammatory Alliance is a non-profit, voluntary organization dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. The Autoinflammatory Alliance is celebrating its first ever awareness month! Raise more awareness by using the hashtaghs #autoinflammatoryaugust for the rest of this month!

1.) What does it mean to you personally to be a patient organization serving… Read More

August 24, 2015

TOPIC: Medical, Patient Stories, Press Releases, Sticky Posts for Clinicians and Researchers, Sticky Posts for Homepage

New Video from NORD Promotes Awareness of Rare Movement Disorder Neurogenic Orthostatic Hypotension

Posted by Jennifer Huron
NORD-Making Sense of NOH-Homepage

A new video released today by the National Organization for Rare Disorders (NORD) fills a gap in health care by educating patients and doctors about a rare medical condition known as Neurogenic Orthostatic Hypotension (nOH), and how to improve patient outcomes.

“Living with a rare condition like nOH affects every part of your daily life,” says Mary Dunkle, Vice President of… Read More

August 17, 2015

TOPIC: Featured News

Member Spotlight: FIRST

Posted by Christina Jensen
For Web

The Foundation for Ichthyosis & Related Skin Types (FIRST) is a voluntary organization dedicated to helping individuals and families affected by the inherited skin diseases collectively called the ichthyoses. The ichthyoses are a group of rare, inherited disorders characterized by abnormally dry, scaly, thickened skin due to abnormalities in the production of the protein keratin. FIRST provides support, information,… Read More

August 14, 2015

TOPIC: Advocacy

Advocating for Rare Disease Patients at the NIH

Posted by Jennifer Huron

NIH Master LogoNORD was glad to have the opportunity to submit comments to the National Institutes of Health (NIH) for its Strategic Plan, where we talked about the importance of programs for rare diseases, especially those for undiagnosed patients that have the potential to solve the medical mysteries that… Read More