Naevus Outreach 2024 – St. Louis (USA)

This year, the Nevus Outreach conference took place in Saint Louis, Missouri. Representing Nevus Netwerk Nederland (NNN), Janine van den Eijnden (NNN buddy) and Marjolein van Kessel (NNN board member) attended the congress. What does Nevus Outreach do to be successful? What inspires us? What information and experiences are we bringing home? Marjolein and Janine share their insights in this report.

After a long journey, we arrived at the Hilton Tree Inn Chesterfield, where we were warmly welcomed. Marjolein saw many familiar faces, and Janine met many new people. It was special to see so many people gathered who share the same experience.

We were among more than 300 attendees (112 parents, 25 grandparents, and 5 friends). In 2022, Nevus Outreach launched a membership program with the goal of reaching 1,000 members by 2024, and that goal has been achieved! Most members are from the USA, but there are also many members from other countries (36 spread across 6 continents). The oldest attendee had just discovered Nevus Outreach and is 73 years old, while the youngest is a 4-month-old baby.

First, we attended this conference because there is overlap, particularly in the genetic area, between this type of birthmarks and vascular malformations. The NNN organization also attends our conference.

Second, we attended this conference to establish new contacts and gather new ideas (such as a separate parallel session for mothers and for fathers).

Third, Marjolein van Kessel (NNN) and Lex van der Heijden (CMTC-OVM) are married, a unique rare diseases marriage, which allows for a lot of information to be shared and developed together (such as the Parents Help Guide).

Below, a number of topics are discussed.

Nevus Outreach (and CMTC-OVM) collaborate with PEDRA (Pediatric Dermatology Research Alliance).

Mike Siegel (PEDRA) and Maggie Mangold (a CMN patient advocate and physician, Nevus Outreach) led this presentation. Nevus Outreach aims to establish a medical registry. This is not a membership registry, but a registry that includes medical data to facilitate research, as research needs to progress at a faster pace.

The registry is being developed for and by CMN patients in the United States, but according to Mike Siegel (PEDRA), it could be expanded in the future to include people from Europe. It must meet the criteria required by researchers for conducting scientific studies. To ensure this, there is collaboration with Anne Fledderus, known for her work on the OCOMEN study on outcome measures. The registry needs to be patient-centered, focusing on outcomes that matter to patients. Patient data will be carefully stored in compliance with GDPR (General Data Protection Regulation) laws.

Thus, the project has begun: the NOOR registry, Nevus Owner Outcome Registry.

During the conference, a group of people with Nevus contributed their thoughts on the questions for the registry. The session discussed common complaints and correlations. Potential links are being explored, such as headaches, abdominal pain, heat sensitivity, and whether birthmarks are affected by cold environments.

In the field of vascular malformations, work on a registry has been ongoing for a long time. One of the key figures is Prof. Dr. Leo Schulze Kool from the Radboud Academic Center in Nijmegen.

Dr. Carry Coughlin (dermatologist) spoke about “shared decision making,” also known as making decisions together. In the past, the doctor determined what the best treatment was for a patient. Now, we know that it’s better if the treatment also aligns with the patient’s choices. In this concept, the patient is part of the healthcare team and is not sidelined while the caregivers decide what’s best for them. Patients and families dealing with congenital birthmarks may face difficult choices.

Dr. Carry Coughlin is working on creating “shared decision” cards for congenital birthmarks. These cards contain medical information along with the pros and cons of a treatment that you need to make an informed decision. They include questions you can ask yourself to help you arrive at a good decision. Similar cards exist for the condition Vitiligo (Shourick et al. J Dermatol. 2021 Apr 8, doi: 10.1111/bid.20137).

The development of these cards is still in the testing phase.

There was a talent show where especially the children showed their talents. A song was sung about birthmarks, a prayer was read and even gaming was a talent that especially the children proudly showed. Dancing, playing the piano and even more singers were also seen at the show.

Sandi Ring is a therapist who works with parents and children. In her presentation she showed how important it is to take good care of yourself. She gave all kinds of tips and instructions to prevent overload.

Steven Bouris and Janine van den Eijnden told their story in a presentation. Two different stories: Steven has struggled with his birthmark on his face for 40 years and in recent years he has learned to deal with it. He shares his lessons learned in recent years. Janine has always been able to deal with her birthmarks well and has undergone laser treatments. After the presentations there was time to ask questions to everyone with Nevus. This happened at round tables where the company changed every fifteen minutes.

Since 2018, Marjolein has been providing a memorial together with Lizy Coleman. They both lost a child to complications from congenital birthmarks. These two children are almost the same age and died in the same year (2012). Lizy also lost her husband later.
The photo on the right is a photo of one table.

The goal is to be able to take a moment to think about the deceased. Both parents and children with CMN and parents whose child has died appreciate the attention. The intention is not to instill fear in people. At this conference we have set up a beautiful table with photos of the deceased, candles, a wooden tree, cards and pens and origami paper. Anyone who wanted to could fold a crane or write a text to hang in the tree. Beautiful wishes and texts were written.

On Tuesday evening, paper bags with a candle in them and a photo on them were placed along a path. People could walk along this. From the path you walked to the large hall where a memorial video was shown. The video was made by Quinten (NNN board).

Memoral video

The last evening was festively concluded with a gala dinner and a party night. The hall was transformed into a party room with round tables for a delicious dinner. There was a hairdresser present who festively made the hair of the children and youth. A photo booth, dance floor and DJ completed the evening. Young and old enjoyed a nice evening where everyone could be themselves.