If your country does not have a national patient association yet, you still have ways to connect with other advocates for people with large and giant congenital melanocytic nevi (CMN). And you can still be represented in Naevus Global!
The first thing to do is to contact us. We can often introduce you, through the Internet, to other families and professionals who know about CMN and who speak your language. Naevus Global has also foreseen representation of patients without a national association, with a membership category known as "Chapter-at-Large". Members of the Naevus Global federation are patient groups, not individuals. The Chapter-at-Large is your group if you do not decide to join any of the many other possible associations, or plan to start a new association for people in your country. We can give you logistical and moral support. Here are some starting points.
By Mark Beckwith, Chief Executive, Nevus Outreach (USA)
This is a very good question. With a rare disease, it seems to be against the odds that patient families might ever find each other! But with the power of the internet, it is not as hard as it used to be. Nevus Outreach was started in 1997 by only three families. These families worked hard to find each other on the Internet. That was 16 years ago. Now, it is easier to find each other on the Internet.
Internet access makes it possible. If you search for “congenital melanocytic nevus” or “large nevus” and the name of your country, you will find quickly if there is already a patient association in your country. If there is, then don’t start another one. Get to know the existing organization.
You should only start a patient association if there is not one in your country already, or if the one that already exists does not do what you need from a patient association. However, you should be very careful to decide that an existing patient association does not do what you need. Sometimes it takes a lot of effort to learn the answer to this question. You must put in this effort, because having multiple patient associations in the same country is not an optimal situation. With a rare disease it can be hard enough to find people for two associations, let alone for one association. It can be a much better solution to figure out how to work together. Only after you have figured out that you cannot work together, should you consider “reinventing the wheel.”
In the case of Nevus Outreach, we did not reinvent the wheel. We made a completely different wheel that looks nothing like the first wheel. We needed a USA 501(c)(3) charity structure and family conferences, both of which the existing patient association would not participate in. Only after both parties understood this completely did we start a new patient association.
We are very glad we started a patient association that can raise money effectively and hold family conferences. Because donors receive a tax benefit from giving to Nevus Outreach, we raise enough money to keep all our web sites running, and support a significant amount of scientific research. We have succeeded in making sure that any patient in the USA can find us, easily, and in a variety of different ways.
Find the people and get them all in one place for one weekend. If you do this, you will understand immediately how important it is to continue, united. There is nothing I can write that will explain this better, than actually having the gathering. Once you do that, there is nothing more that can stop you.
When I think about the early years of Nevus Outreach, I recall a few things we learned which are worthy of remark.
We have learned over the years is that there are many diseases that have the word “nevus” as part of the name of the disease. In 1997 when we created Nevus Outreach, we did not realize how the internet would evolve into a tool where so many people who are not affected by our kind of “nevus,” the “congenital melanocytic nevus,” (CMN) would come to us for help.
It is difficult sometimes to help people who come to us who do not have CMN. In many cases they have been disenfranchised by the healthcare system and society, so in many ways we know some of what they are going through. Unfortunately when it comes to explaining their particular medical issues and options, we do not know as much about their kind of nevus as we know about our kind of nevus.
Sometimes we wonder if “Nevus Outreach” was the best name for our group. We have built many pages of information about other kinds of nevi. Still, some of the people who surf to Nevus Outreach looking for information about other kinds of nevi don’t learn we can’t help them until they ask for help, and we take the time to reply to their questions about a different kind of nevus.
In one case we provide a web site for a different kind of nevus called Linear Nevus Sebaceous Syndrome (LNSS). Given how well that has worked out, we might think about doing this for other kinds of nevi. The most important thing in this case would be a clear understanding that we are not going to do anything more than provide the web site. There are other people who design, write, build and maintain that content. It works out great for everyone – it’s easier on us because we can channel inquiries about LNSS there, and it works out for people affected by LNSS because they have a web site where they can network together. From our perspective it is money well spent.
In 1998, the morning after our first conference had concluded, I had breakfast with Dr. Ashfaq Marghoob, who you probably know is one of the most knowledgeable and influential healthcare and research specialists for CMN in the world. He asked me, “How do you people know so much?”
This was music to my ears, and validated our entire Nevus Outreach journey up to that point. The reason we knew so much was because we realized we should, so we went out and learned it. It was great to learn that one of the top nevus doctors in the world would regard us so highly.
As a parent of a child with a nevus, we are our child’s biggest (sometimes only) advocate. We are highly motivated to perform that role the best we can. This makes sense – we concern ourselves with this one disease; where professional doctors have thousands of diseases competing for their attention.
Unless your doctor has a number of patients with CMN, they will most likely know less than you will about large pigmented moles present at birth. Some doctors have a hard time saying, “I don’t know.” If your doctors are not nevus experts, then you need to work with the kind of doctor who can look you in the eye and admit, “I don’t know.”
This is a little wisdom about how to build a nevus patient association. If you think you may want to start one, please contact us here at Naevus Global and we can help you get going in the right direction. It is important to get together all the people with CMN in the world. We can work together to help all people who have CMN, and nobody else will do it if we don’t. Alone we are rare. Together we are strong.