Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Large Congenital Melanocytic Nevus

What is Large Congenital Melanocytic Nevus?

A Large or Giant Congenital Melanocytic Nevus (plural: Nevi) is a pigmented lesion, substantial in size, either present at birth or very shortly after birth (within 2 years). These rare large birthmarks carry a small risk of neurological (brain) complications, and are presumed to increase the incidence of skin cancer compared to people who don't have them. Because people who have these "look different" psychological impacts can be great.

 

A Large or Giant Congenital Melanocytic Nevus (plural: Nevi) is a pigmented lesion, substantial in size, either present at birth or very shortly after birth (within 2 years). These rare large birthmarks carry a small risk of neurological (brain) complications, and are presumed to increase the incidence of skin cancer compared to people who don't have them. Because people who have these "look different" psychological impacts can be great.
Acknowledgement of Large Congenital Melanocytic Nevus has not been added yet.
5.0http://www.orpha.net
Synonyms for Large Congenital Melanocytic Nevus has not been added yet.
Cause of Large Congenital Melanocytic Nevus has not been added yet.
Symptoms for Large Congenital Melanocytic Nevus has not been added yet.
Diagnosis of Large Congenital Melanocytic Nevus has not been added yet.
Diagnostic tests of Large Congenital Melanocytic Nevus has not been added yet
Treatments of Large Congenital Melanocytic Nevus has not been added yet.
Prognosis of Large Congenital Melanocytic Nevus has not been added yet.
Tips or Suggestions of Large Congenital Melanocytic Nevus has not been added yet.
References of Large Congenital Melanocytic Nevus has not been added yet.
Logo

Large Congenital Melanocytic Nevus community discussions will be posted here.

There are no new discussions. Start one now!!

Community External News Link
Title Date Link
Community Resources
Title Description Date Link
Nevus Outreach

Nevus Outreach, Inc. is a non-profit organization that was founded by families affected by Large Nevi and Neurocutaneous Melanocytosis (NCM) to offer support and information to others who are similarly affected, improve awareness and education of the condition, and encourage and sponsor research that will lead to effective treatments and a cure.

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

megansdad

I am the Executive Director of Nevus Outreach. My daughter has a bathing trunk nevus and neurocutaneous melanocytosis (symptomatic).

 

Expert Questions

Ask a question

Community User List

<p>I am a molecular cell bi...
<p>I am the CEO of Nevus Ou...
I was born with this defect...
I am the Executive Director...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Logo

Large Congenital Melanocytic Nevus community discussions will be posted here.

There are no new discussions. Start one now!!


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.