Rare Disease Day

NLMSF Supports Rare Disease Day

February 28, 2015

National LeioMyoSarcoma Foundation – NLMSF Supports Rare Disease Day® and
Joins Global Movement to Raise Important Awareness for Rare Diseases

The NLMSF has joined forces with rare disease patients and health care advocates in the U.S. and around the world for Rare Disease Day® on February 28.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.

 

Leiomyosarcoma is designated a rare disease. The incidence, survival and trend statistics of LMS show the need for awareness and understanding of this fatal, rare cancer. Such a designation can make a big difference in future research funding that leads to improved treatment outcomes and survival rates.

 

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people.  Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.

 

The National LeioMyoSarcoma Foundation will be representing YOU; patients, survivors, caregivers and lost loved ones during Rare Disease Week February 23-27 in Washington, D.C.

It is the NLMSF’s mission to raise awareness for Leiomyosarcoma – LMS and we want our voices to be heard on the hill. So we are sending representatives from the NLMSF to meet and network with other organizations that support nonprofits to have a unified voice and show of support to the Congressional legislators who are sponsoring rare disease legislation entitled:

” 21st Century Cure Initiative.”

 

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.

 

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.

Congress wants to learn more about Rare Diseases. Help the NLMSF raise awareness for Leiomyosarcoma by writing Congress and telling them your LMS story.

Reaching For the Cure Together