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October 19, 2015

TOPIC: Featured News, Research, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Get Involved

Rett Syndrome Research Trust

Posted at October 10, 2015 12:58 pm by Lisa Sencen

This week’s member spotlight was written by:
Monica Coenraads, Co-Founder, Trustee, and Executive Director of Rett Syndrome Research Trust.

 

“October is Rett Syndrome Awareness Month. This October also happens to be the seven-year anniversary of the launch of the Rett Syndrome Research Trust, a non-profit I started to spur research to a new phase where it will have an impact… Read More

October 12, 2015

TOPIC: Featured News, Medical, Patients & Members, Research, Advocacy, Industry, Events, Patient Stories, Get Involved

Raise Your Voice: Rare Disease Day 2016 is Coming

Posted at October 10, 2015 10:56 am by Jennifer Huron

Rare Disease Day Handprints Across America

Date: February 29, 2016
Global Theme: Patient Voice
Global Slogan: Join us in making the voice of rare diseases heard

By definition, each rare disease affects a small segment of the population, yet combined the 7,000 known rare diseases affect 30 million people -… Read More

October 5, 2015

TOPIC: Featured News, Research, Get Involved

The Undiagnosed: Orphans of the Rare Disease Community

Posted at October 10, 2015 10:19 am by Rose Gallagher

While the approximately 7,000 known rare diseases run the full spectrum of symptoms and experience, rare disease patients encounter many common obstacles. Rare patients face incredible difficulty finding safe and effective treatments, and even if such treatments exist, a multitude of reimbursement difficulties await.  Rare disease patients often wait years for an accurate diagnosis, as the medical community may… Read More

September 24, 2015

TOPIC: Medical, Research

Rare Disease of the Day

Posted at September 9, 2015 08:00 am by Lisa Sencen

Today’s Rare Disease of the Day is:

 

Von Hippel-Lindau disease (VHL) is caused by a gene mutation which frequently induces both nonmalignant tumors and malignant tumors (or cancers) that can spread to other organs (become metastatic). Tumors may develop in up to ten different parts of the body. Many of these tumors involve the abnormal growth of blood vessels… Read More

September 16, 2015

TOPIC: Press Releases, Featured News, Medical, Patients & Members, Research, Advocacy, Industry, Events, Patient Stories, Get Involved

Rare Disease Day 2016 Theme and Slogan Announced!

Posted at September 9, 2015 04:52 pm by Jennifer Huron

Rare Disease DayTheme: Patient Voice
Slogan: Join us in making the voice of rare diseases heard

It’s here! As the official sponsor and host of Rare Disease Day in the U.S., NORD is excited to announce the theme for Rare Disease Day 2016 with EURORDIS, our partner and the… Read More