Rare Disease: Where Precision Medicine Was Born
Business
149 views
Business
149 views

Rare Disease: Where Precision Medicine Was Born

Wendy White - March 5, 2015

As the mother of a child with a rare disorder, I’ve watched with interest and admiration as this community has broken one barrier after another—innovating, advocating, collaborating,…

How Technology Will Improve the Future for Rare Diseases
Specialties
117 views
Specialties
117 views

How Technology Will Improve the Future for Rare Diseases

Wendy White - April 11, 2014

Our collaboration with Global Genes and Sharon Moalem, MD, PhD at H@cking Medicine at the Massachusetts Institute of Technology (MIT) was an unqualified success. Our collaboration with…

Moving Towards Personalized Care with Healthcare’s Biggest Advocates
Specialties
110 views
Specialties
110 views

Moving Towards Personalized Care with Healthcare’s Biggest Advocates

Wendy White - November 29, 2013

When my daughter Casey was born with nail-patella syndrome (NPS), the orthopedic surgeon said she would never climb stairs. When my daughter Casey was born with nail-patella…

Supreme Court Ruling Impacts Genetic Research
Policy & Law
179 views
Policy & Law
179 views

Supreme Court Ruling Impacts Genetic Research

Wendy White - June 22, 2013

On June 13, 2013, the US Supreme Court ruled that human genes may not be patented. The unanimous decision will have a far reaching impact on genetic…

The Orphan Drug Renaissance
Global Healthcare
142 views
Global Healthcare
142 views

The Orphan Drug Renaissance

Wendy White - June 15, 2013

A period of a renewal of life, vigor, interest is how renaissance is defined by Random House Dictionary. I think we are currently undergoing an orphan drug…

Advocacy Group Helped Fund New FDA-Approved Orphan Drug
News
135 views
News
135 views

Advocacy Group Helped Fund New FDA-Approved Orphan Drug

Wendy White - May 2, 2013

I like to say rare diseases are different. One key way is that, for orphan conditions, it’s often the patients who are driving and funding the research.…

New Mobile App Connects Duchenne Families to Clinical Trials
eHealth
185 views
eHealth
185 views

New Mobile App Connects Duchenne Families to Clinical Trials

Wendy White - April 30, 2013

I have been privileged to know Pat Furlong for the past several years and work alongside her on the board of the National Organization for Rare Disorders…

Rare Disease Day 2013: Help Spread Awareness
News
160 views
News
160 views

Rare Disease Day 2013: Help Spread Awareness

Wendy White - February 26, 2013

Each year Rare Disease Day is celebrated worldwide on the last day of February. Each year Rare Disease Day is celebrated worldwide on the last day of…