Marjolein van Kessel
Marjolein van Kessel
Europe/USA: Marjolein van Kessel, has visited several conferences to be inspired, gain information, learn from other organizations and connect to other people and organizations. She has also visited national gatherings or conferences organized for people with CMN. The visited support groups are: Nevus Outreach (USA), Näevus Netzwerk (Germany), Nevus Netwerk Nederland (the Netherlands) and Naevus2000 (France).
At the Nevus Outreach conference and the Naevus2000 conference Marjolein has given a presentation on the importance of working together on an international level. She has participated in a panel discussion at the nevus outreach conference.
South America: Pedro Rolando Lopez reports the social groups are growing, the big ones are in Mexico, Argentina and Colombia. Besides Facebook, WhatsApp is connecting people too. The challenge for the next years will be to have a census of South America as there is not much information in their countries.
South Africa: Rare Disease Day 2018 was a very special day for Nevus Association South Africa. A group of supporters hiked to the top of Table Mountain in Cape Town where they proudly held up signs. In October, the third annual gathering with families travelling from all over South Africa was held in Simon’s Town in the Western Cape. Dr Dagmar Whitaker, president of the Melanoma Society South Africa, was the keynote speaker. The group is growing slowly but steadily.
Connecting people with CMN worldwide:
- Czech Republic and Slovakia: have a patient support group
- Poland has a Facebook group
- Norway, Sweden, Finland and Iceland have a combined Facebook group for the Nordic countries
- Croatia has a dedicated dermatologist and CMN expert willing to serve as a contact
- Rumania has a dedicated dermatologist and CMN expert willing to serve as a contact
The maps show the countries where we have connections.
Dark blue: country with patient support group
Green: country with a less formally organized patient group, like a Facebook group
Light blue: country with at least one single connection who lives in the country, knows the language and culture and (preferably) knows a doctor familiar with CMN in the country.
Scientific/organizational conferences attended:
Eurordis is the European organization for rare diseases. More than 900 people from 58 countries were present and 120 speakers. In addition, there were many poster sessions that were meant to present an organization. Marjolein presented a poster for Naevus International.
MPNE (Melanoma Patient Network Europe) is an organically growing multidimensional network system of predominantly European Melanoma patients, carers and advocates and operates effectively across cultural and language barriers according to subsidiarity and shared principles.
Global Skin is a worldwide organization for all skin disorders. They are working on a project called Global Research on the Impact of Dermatological Diseases (GRIDD). GRIDD aims to develop, with patient organizations, a global instrument to measure the impact of living with skin diseases globally. Further, it will capture patient experiences including the extent of disease impact and burden for patients and their families.