Last Monday, February 28th, organizations and individuals all over the world honored the third annual Rare Disease Day, a time to improve education about rare disorders and increase awareness of the approximately 25 million Americans that currently live with such a disorder.

With Rare Disease Day behind us, there are still ways to get involved and raise awareness for these “Rare But Equal” diseases. The National Organization for Rare Disorders (NORD) is asking patients who suffer from a rare disorder to record and submit a video as part of the NORD video encyclopedia to educate the public. Alnylam Pharmaceuticals, which recently unveiled its plans to focus on innovative RNAi therapeutics for genetically defined rare diseases, is hoping to encourage the building of this collection with a donation to NORD for each video submitted.

To spread the word, Maryellen Livingston of Alnylam spoke with Tai Spargo of NORD and Mary O’Donnell of partner organization, the Amyloidosis Foundation–listen to this podcast to learn more about the importance of Rare Disease Day and the impact you can have on the 1 in 10 people in the U.S. that live with a rare disease.

 Listen to the podcast (audio only).

The following interview with Dr. Jan Gurley, a board-certified internist physician, was recently featured on the Better Health blog.

Dr. Jan Gurley just returned from a mission trip to Haiti, 5 weeks after the earthquake hit. In this audio clip, she relays a horrific first-hand account of the current realities of life in Port Au Prince. With no running water, bathrooms, or place to shelter – and packed into a field with 100,000 people – some young women are choosing to stop drinking water in an effort to commit suicide.

Dr. Gurley describes the loss of human dignity associated with the crisis in Haiti, including a near stampede when sanitary napkins were offered in a crowd of women. She explains that the place is becoming dangerous – and the screams of women being raped in the night fill the dark air. In the day time, people huddle together for safety while the stench of rotting corpses surrounds them. With the rainy season approaching, and tent cities perched precariously on land-slide prone hills, Dr. Gurley predicts a second wave of disease, violence, despair, and death in Haiti.

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Jennifer Berk is Director of Marketing and Internet Strategy at Amplify Public Affairs, and she’s behind most of the news links posted to Disruptive Women’s Twitter account.

I’m a fairly informed patient, but by no means a health care expert.  That makes working on this blog a wonderful opportunity: I can learn about complex health care systems from blog posts, news stories, and events – and share the information I’ve found.

Jonathan Sheffi is a friend of mine from college and a future biotech executive (he’s interning at the FDA this summer before heading to Harvard Business School). He recently wrote a comprehensive blog post about follow-on biologics, and I had a chance to talk with him about why he’s drawn to health care, biologics issues, and the upcoming BIL:PIL unconference. Listen to the podcast:

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Read more:

• http://jonathansheffi.com/ or @sheffi
• http://bilpil.com (October 30-31, San Diego)

Disruptive Women in Health Care is pleased to present our first ever Man of the Month post.

We received many worthy suggestions (keep them coming, please) and have quite a line up to share over the next few months.  Today, Google’s Missy Krasner, a founding Disruptive Women in Health Care blogger, interviews Matthew Holt, Co-Founder (along with Indu Subaiya) of Health 2.0.  Matt also serves as editor of The Health Care Blog.  If you have an interest in, or want to learn more about Health Information Technology, how the Internet can improve health outcomes, the wisdom of crowds, and Matt’s pick for HHS Secretary, you are in for a treat.

Let us know what you think.

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