Nevus Outreach, Inc. is one of the largest, if not the largest, patient advocacy groups for people with Large Congenital Melanocytic Nevi (CMN) in the world. We work tirelessly to promote knowledge and understanding, advance research and provide a network of support for people with CMN.
What is Patient Advocacy?
Basically, a patient advocate is someone who acts on the behalf of a patient to make sure that patient receives the best care possible, both medical and emotional. Nevus Outreach acts as a patient advocate for people with CMN in several ways:
Educate and Provide Emotional Support for New Parents of Children with CMN
New parents of children with CMN have entered a world that is full of questions and worries that they never imagined even existed. No one needs an advocate as much as these parents do in the first few weeks of their child's life. Since CMN is such a rare condition, doctors often don't have current and accurate information about the condition. Well-meaning health professionals can give outdated or incorrect information that is needlessly distressing to new parents. Nevus Outreach promotes education for healthcare professionals and provides current and accurate information to parents of children with NCM.
Provide Encouragement and Education for Extended Family and Friends of People with Large Nevi
Oftentimes, the family of people with large nevi want to do something to help but don't know where to begin. They also may have many questions they would like answered but are hesitant to ask new parents for fear of causing upset. Nevus Outreach is an invaluable resource to the family of people with CMN, not just providing education and support, but also giving family members an active way to be a part of the nevus community.
Bring Adults with CMN Together for Support and Encouragement
Over the years, we have heard from scores of adults with CMN who have never met another person who shares their condition. One of the happiest parts of our job is bringing people with nevi together through support groups, conferences and nevus gatherings.
Promote and Raise Funding for Research on CMN
Nevus Outreach works in many ways to raise money for research for CMN. It is our goal to find cures and treatments for CMN and related disorders. We have made giant strides toward that end, but there is still much to learn. We can't do it without people like you, though, so be sure to learn about how you can help.
Raise Awareness of and Educate the Public About CMN
Most people have no idea what a large congenital melanocytic nevus is, and we want to change that! By providing easy-to-access information and spreading the word to doctors and caregivers, we are getting the word out about CMN. When the public is aware of what CMN is, they are generally much more accepting of those who look different because of their "spots."
Provide Ongoing Emotional Care by Facilitating the Nevus Outreach Facebook Group
One of the most successful projects we have ever started has been the Nevus Outreach Online Support Group. Begun as a Yahoo! Group and now operating as a Facebook Group, we have nearly 4000 members who have posted thousands of questions, answers and other communications. The Online Support Group is a fantastic community where people with CMN provide love and encouragement that can be found nowhere else.
Provide Information for and Educate Doctors about CMN
Most healthcare professionals have never met a patient with CMN. Though they mean well, medical professionals often give out-dated information that is incorrect and sometimes needlessly pessimistic. Nevus Outreach makes information available to doctors so that they may provide accurate guidance for their CMN patients. The Best Practices Guidelines, found in the resourse section, is a great tool to help your doctor help you and your child care for their nevus.