Naevus Global attends conferences from other international organizations.,
- We share our experiences and learn from other organizations, sharing good practices.
- We connect to patient advocates from other organizations.
- We learn from the conferences.
- We represent our rare condition Congenital Melanocytic Naevus (CMN).
Upcoming conferences 2020:
Eurordis ECRD May 12-14, 2020 (online)
Naevus Global poster 2020 “Patient journey Congenital Melanocytic Naevus syndrome” P122 (click on image to see full poster)
Workshop ERN skin, Ghent, December 2019
Naevus Global was invited to participate in a panel for a training session within the European Reference Network Skin in Ghent. The audiences were doctors and professors from various countries with both medical and genetic backgrounds. Together with 3 other panel members from various countries we were asked to discuss ‘patient burdens in rare skin disorders – what do physicians need to know?’. The training course was intended for the doctors and researchers from the ERN-skin. About 60 people were present, many of them were doctors in training. It was the first time patient representatives were asked to join a meeting like this for a panel discussion. We were honored to be given this opportunity. “NOTHING ABOUT US, WITHOUT US”
Report: Panel discussion 2019 Ghent
ICORD, Tel Aviv, November 2019
On 11, 12, and 13 November 2019, the global ICORD conference was organized in Tel Aviv, Israel, in close cooperation with many Israeli organizations such as the Ministry of Health. ICORD is an International Society for all individuals active in rare diseases and/or orphan drugs, including health care, research, academic, industry, patients, patient groups, regulatory authorities, health authorities, and public policy professionals. The CMN patient organization from Israel, Children of light, was able to attend and give a presentation and exhibit a poster.
Report: ICORD 2019 Tel Aviv
Global Skin, Milan, June 2019
The Global Skin Foundation organized two Congresses in Milan (Italy) June 5th-9th, 2019. Naevus Global And Nevus Outreach were able to attend. The first congress was held on the 5th and 6th of June and was organized for representatives involved with rare skin disorders (RareDERM). A strategic plan for rare skin disorders was developed afterward. The second Congress was on the 7th and 8th, and partly on the 9th. and was intended for representatives of patient organizations representing those with skin conditions, including psoriasis and eczema. There were 140 attendees from 35 countries at the second conference. The speakers came from all over the world and spoke on a broad range of topics that cover not only medical aspects but also genetic and psychosocial aspects.
The GRIDD project (Global Research on the Impact of Dermatological Diseases) is the first worldwide patient-initiated and patients-controlled impact research study in dermatology. The goal is to measure the actual impact of skin diseases from the patient’s perspective.
Eurordis membership meeting, Bucharest, May 2019
Progress in ERN’s, patient involvement through ePAGs. There are strong developments in international cooperation: research recognition of rare diseases and ambitious goals – like work with Global Commissions, the NGO committee, the WHO, and IRDIRC (international rare diseases consortium. The Eurordis member meeting 2019 started with an ePAG face to face meeting. During the meeting, participants explored a selection of good practices that ePAG patient advocates presented and discussed with their peers. As such, this meeting was an opportunity to learn from each other and build your network with patient advocates working in other European Reference Networks. The presentation on patient journeys (last session) and the information given on registries (Orphanet and HPO) were very interesting.
MPNE-rare, Berlin, October 2019
At the conference, there were 10 different sessions. In the introduction, Bettina Ryll said, that rare melanoma should use the fully available network for melanoma and it´s one of the main aims to raise the knowledge for patients and patients advocates. The topics of the sessions were:
- Thinking rare melanoma’s
- Precision medicine in rare melanoma’s
- Essential anatomy
- Pediatric and familial melanoma
- Ocular melanoma
Report: MPNE rare Berlin 2019 (Benjamin Blume)
NORD, Washington DC, November 2019
On 20, 21, and 22 October the American Organization for Rare Disorders NORD organized another annual congress with around 900 participants. On Sunday afternoon a special session was organized for the Patient Leaders. We were placed into groups and a specific subject was discussed per table. The conference on Monday and Tuesday consisted mainly of panel discussions. The panels consisted of a wide variety of participants with different backgrounds such as patient organizations, the US Food & Drug Administration (FDA), pharmaceutical companies, the National Institute of Health (NIH), and NORD.
NORD, Washington DC, 2019
MPNE, Brussels, March 2019
The conference had presentations at different levels of complexity. There was a quick start to learn about your melanoma stage and how melanoma develops. There were presentations for patient advocates on how to make a patient journey, work with infographics, and a patient review tool, to review the readability of articles for patients was presented.
Eurordis, ECRD 2018
From 10 to 12 May 2018, the European Organization for Rare Diseases Eurordis (www.eurordis.org) organized a global conference with the theme ‘collaborative strategies to leave no one behind. This year was the conference in Vienna. More than 900 people from 58 countries were present and 120 speakers. Naevus Global was able to present a poster ‘Connecting the dots’ showing the progress on how we reach out and work together. The main theme fell into the following subthemes:
- Breakthrough medicines on the horizon.
- Quality of life: making what matters, matter.
- The digital patient.
- Global rare equity. Are we there yet?
- Economical perspectives in rare diseases.
- Structuring the research and diagnosis landscape.
Report: Membership meeting Eurordis 2019
Poster Naevus Global exhibited at the conference: