TOPIC: Patient Stories
Abigail MacCurtain was born a happy and healthy baby girl in the winter of 2011, despite being born at 35 weeks due to Premature Rupture of Membranes (PROM). The only notable problems were a large birthmark on her head and a failed Auditory Brainstem Response (ABR) Test, but medical professionals reassured Abby’s family that there was nothing to worry… Read More
TOPIC: Medical
NORD Publishes Free Online Guides to Encourage Diagnosis and Treatment for Patients
The National Organization for Rare Disorders (NORD) has published a Physician Guide to Nontuberculous Mycobacterial Lung Disease to promote awareness of this rare disorder among physicians and other medical professionals.
The guide is free and available to all at www.NORDPhysicianGuides.org, a website hosted by NORD. The… Read More
TOPIC: Featured News, Patient Stories
Sophia Hanson is a college student and has the rare disease, Lymphedema. She is writing for NORD about the balancing act of going to college, moving away from home, and managing a rare disease.
Sophia and her father in… Read More
TOPIC: Featured News
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
TOPIC: Featured News, Advocacy, Get Involved
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
