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October 28, 2015

TOPIC: Patient Stories

They Said things like, “She’ll Grow Out of It”

Posted by Lisa Sencen

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

October 28, 2015

TOPIC: Medical

NORD Publishes Guide to Promote Physician Awareness of Rare Lung Disorder

Posted by Jennifer Huron

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, a website hosted by NORD. The… Read More

October 26, 2015

TOPIC: Featured News

Neuroendocrine Tumor Research Foundation

Posted by Lisa Sencen

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

October 22, 2015

TOPIC: Featured News, Advocacy, Get Involved

NORD Releases First-Ever State Progress Report for Rare Diseases

Posted by Jennifer Huron

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