Advocacy Archives - Page 39 of 42 - NORD (National Organization for Rare Disorders)

September 2, 2014

TOPIC: Advocacy, Featured News, Industry, Medical, Patient Stories, Patients & Members

Children’s Cardiomyopathy Awareness Month Urges Families to #KnowYourHeart this September

Posted at September 9, 2014 06:12 am by admin

Carmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17. A gifted basketball player, Dorien had no warning signs of an underlying heart condition. Upon autopsy, Dorien was diagnosed with cardiomyopathy, an incurable and potentially life-threatening disease that affects how the heart muscle pumps blood through the body.

Dorien’s tragic death highlights a growing… Read More

Tags: American College of Cardiology, cardiac, cardiomyopathy, Carmina Taylor, CCF, CDC, Children's Cardiomyopathy Awareness Month, Children's Cardiomyopathy Foundation

July 11, 2014

TOPIC: Advocacy, Featured News

NORD at Capitol Hill Hearing: Patients Have Unique Perspective That Needs to be Heard

Posted at July 7, 2014 12:00 am by Mary Dunkle

NORD Board Member and Scientific Adviser Marshall Summar, MD, underscored the importance of the patient voice in his invited testimony on behalf of NORD at a July 11 hearing hosted by the House Energy & Commerce Committee Subcommittee on Health as part of the 21st Century Cures initiative. Read More

Tags: 21st Centure Cures, Advancing Innovation, Dr. Marshall Summars, House Energy & Commerce, Mary Dunkle

July 9, 2014

TOPIC: Advocacy, Patients & Members

Knowing More About Noonan

Posted at July 7, 2014 04:51 pm by

Katie Thortenson of Chicago is a proud mother of two healthy sons: her eldest, Jake, is 6, and her youngest, Drew, is 2, but often mistaken to be younger. When people ask why he’s so small, Katie explains… Read More

Tags: atrial septal defect, autosomal genetic disorder, Chicago, congenital heart defects, Dr. Noonan, gene mutation, Katie Thortenson, Lurie Children's Hospital, Nasogastric Tube, Noonan Syndrome, Noonan Syndrome Foundation, NORD, online support group, pulmonary valve stenosis, rare disorders, Samantha Scheer

June 17, 2014

TOPIC: Advocacy, Featured News, Industry, Medical, Patients & Members, Research

NORD Recommendations for Advancing Drug Discovery, Development, and Delivery

Posted at June 6, 2014 05:24 pm by Mary Dunkle

On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st Century Cures Initiative outlining ways to improve the discovery, development, and delivery of medical treatments in the U.S. Read More

Tags: 21st Century Cures, access to treatments, advancing drug development, FDA, Mary Dunkle, NIH, rare disease treatments

June 2, 2014

TOPIC: Advocacy

NORD Outlines Steps to Promote Innovative Drug Discovery, Development and Delivery for Americans with Rare Diseases

Posted at June 6, 2014 08:54 pm by Mary Dunkle

National Organization for Rare Disorders Submits Comments in Response to Congressional 21st Century Cures Initiative “Call to Action”

The National Organization for Rare Disorders (NORD) has submitted comments to the Congressional 21st Century Cures initiative outlining nine steps to promote the development of treatments and cures for the 30 million Americans with rare diseases. Read More

Tags: 21st Century Cures, Congress, drug discovery, Energy and Commerce Subcommittee, Mary Dunkle, Representative Degette, Representative Upton, white paper

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