Nevus Outreach Joins Patient Groups Around the World to Bring Recognition to Rare Disease
BARTLESVILLE, OK – February 28, 2013, Nevus Outreach joins the European Organization for Rare Diseases (EURORDIS), the National Organization for Rare Disorders (NORD) and people around the world in celebrating the sixth annual Rare Disease Day. This year’s theme, Rare Disorders Without Borders, highlights the importance of widespread recognition of rare diseases as a global health challenge. Rare Disease Day brings a unique opportunity to thank researchers and medical professionals all over the world for their hard work in this rare field.
“When Audrey was born, doctors couldn’t tell us what she had,” said Mary Ayers, the mother of 17 year old Audrey who was born with a large congenital melanocytic nevus (LCMN).“In a world that defines beauty as clear, smooth skin, people born with LCMN face an uphill battle; not only are families presented with a devastating diagnosis, but a condition so rare that information and research is limited.”
LCMN, are dark-colored, often hairy moles that are present at birth. In many cases, these birth marks can cover half or more of a patient’s body. For many rare diseases, like LCMN, there are limited treatment options and no available cure. A neurological complication called neurocutaneous melanocytosis (NCM) can also accompany LCMN: about 7% of people born with LCMN also have a life-threatening pigment in their central nervous systems, which can cause brain and nerve problems. About 1% of patients do not survive.
In 1997 Nevus Outreach was founded to improve awareness, provide support for people affected by large congenital melanocytic nevi, and raise funds to find a cure. Before Nevus Outreach, there was no formal patient support group. “It is frightening for a family to think they are alone, feeling a sense of isolation is why patients and families turn to support groups,” said Mark Beckwith, Founder of Nevus Outreach and father of Megan, who has LCMN. “Thanks to the dedication of many families and medical professionals, incredible breakthroughs are being made in research funded by Nevus Outreach. Our kids are growing up knowing hundreds of others who also have their spots - and that’s what this is all about.”
About Rare Disease Day
Rare Disease Day was launched by EURORDIS in 2008. Today, on the last day of February each year, more than 60 countries around the world observe Rare Disease Day. There is a national sponsor in each country, NORD is the sponsor in the United States. Each year, a global theme is selected. The theme for 2013 is “Rare Disorders without Borders.” For more information visit rarediseaseday.org.
About Nevus Outreach
Nevus Outreach, Inc. is a 501c3 nonprofit organization dedicated to improving awareness and providing support for people affected by this rare disease, and finding a cure.
Nevus Outreach, Inc.