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U.S. Takes Part in Celebrating World Rare Disease Day

Tuesday, March 6th, 2012

Numerous events across the country marked the celebration of Rare Disease Day held on Feb. 29.

Rare Disease Day Badge

The National Organization for Rare Diseases, or NORD, organized various events in several states and countries across the world to raise awareness about rare diseases.

More than 60 countries, including European Union countries, Canada, Russia, Brazil, Argentina, Australia, New Zealand, Japan, China and Taiwan joined with various organizations, advocates and institutions to raise awareness about rare diseases including mesothelioma and other rare cancers, and those affected all over the world.

In the United States, activities were held in Alaska, Arizona, California, Florida, Kansas, Louisiana, Maryland, Massachusetts, Missouri, New Jersey, New York, Ohio, Oklahoma, Rhode Island, Texas, and  Washington, DC.

GOVERNMENT. Politicians pledged their support by lending a hand at fund raising events and organizing expert speakers to talk about rare diseases.

ACADEMIC AND RESEARCH INSTITUTIONS. Several universities and medical institutions also held seminars about different rare diseases. Doctors and researchers discussed the latest research projects and documentaries showed how rare diseases affected patients. Some seminars provided RD bracelets and face painting for children.

ORGANIZATIONS AND FOUNDATIONS. Private organizations organized activities for patients of these rare diseases and their families. Free blood sugar testing was even conducted in one event. Also, there were fun runs and marathons held to raise funds for research on rare diseases.

PRIVATE CITIZENS AND BUSINESSES. In Alaska, an advocate tied a Rare Disease Day Banner on her sled dog for the Alaskan Yukon Quest 300 Mile Race. Some students also made cookies and sold them to help raise funds for rare disease research. Some coffee shops joined in the celebration by giving discounts to those who were wearing the zebra print, the official Rare Disease Awareness colors. Others printed on their flyers the Rare Disease Day logo to contribute in raising awareness. Cocktail parties were also organized as an avenue to help raise funds.

Many more activities were held. To highlight the event, NORD spearheaded the “Virtual Hill Day” for patients and patient advocates across the U.S. to promote awareness and make their voices heard on Capitol Hill. This is an activity, virtually facilitated (online), that aimed to collect as many letters from as many people all over the country. The letters will be presented to President Obama, Members of Congress, and others, so that the call for assistance and proper legislation concerning rare diseases can be heard. Participants were given rare disease badges in Facebook that they can share with their friends.

From just 200 partners in 2009, the number almost tripled this year with around 600 partners committing to take part in Rare Disease Day.

The support that these advocates gave is simply overwhelming. But one day is just to jump start yet more activities year-round. The fight is a continuing war; a war that each human being in this planet must be aware of. Any person can be a victim: a friend, a relative, a family, a child, or even yourself. This fight is not just for the patients. It’s for everyone.

LegalView is one in solidarity with the world. Mesothelioma is one of the 7,000 rare diseases known. Information about this disease is available at LegalView.

What is a Settlement?

Wednesday, November 23rd, 2011

If you are undergoing a vaginal mesh lawsuit, your case could possibly go into settlement, so it is important that you know what a settlement is. A settlement is an agreement met by two parties involved in a law suit. This agreement is usually met before the case goes to final court, and is most commonly financial in nature.

To facilitate the process, many states require a settlement conference a few weeks before trial in an effort to achieve settlement with a judge or assigned attorneys.

Most lawsuits result in settlements, and settlements that are agreed upon right before trial are considered during trial.

Vaginal Mesh Alternatives – Burch Procedure

Thursday, October 27th, 2011

A Burch procedure is a  safer surgical alternative to vaginal mesh implants to treat stress urinary incontinence (SUI). During a Burch procedure, the ligaments that surround the bladder hold up the tissue beside the urethra giving patients continence. These procedures can be done by making incisions through the abdomen, laparoscopically, or vaginally.

While this procedure is one of the many alternatives to vaginal mesh, it has not been proven to be more effective than other alternatives, notably the synthetic sling. However due to concerns regarding the safety of vaginal mesh precedures, more and more women have requested this option over trans vaginal surgical mesh.

In 2011, United States Food and Drug Administration (FDA) warned health care professionals about the dangers of trans vaginal mesh asking them to receive specialized training on how to correctly implant the device and tell their patients of any complications associated with it. Many side effects of vaginal mesh may be long-term and life changing.

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