Rare Disease Awareness Month 2024
Throughout Rare Disease Month, we invited our members and social media followers to DONATE and SHARE this image to raise the profile of CMN as a rare disease!
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Experiences of CMN
Experiences of CMN Living with Congenital Melanocytic Naevi (CMN), as a rare disease, is different for everyone and therefore how we can best provide support depends on these variable experiences. CMN has many different types leading to differing experiences for those affected. For some, CMN is found solely on the skin as a dark brown…
Supporting members through Medical Trials
Alongside funding the groundbreaking CMN research carried out by Professor Kinsler and the research team at UCL GOS Institute of Child Health and The Francis Crick Institute, as a charity, we also work hard at supporting our members who participate in the CMN research projects, such as those who’ve give skin biopsies and those trialling…
Impact of public exhibition on the perception of birthmarks
Caring Matters Now is delighted to share a publication from Jodi Whitehouse (Caring Matters Now CEO), Professor Veroinca Kinsler, Morgan B Zolkwer and Saskia C. Sanderson focused on the incredible impact from our ‘how do you C Me Now?’ photographic exhibition series in the Paediatric Dermatology medical journal. BACKGROUND: The importance of photographs in social…
Caring Matters Now: the journey so far!
When a picture is worth a thousand words! For those who have been involved in the life of Caring Matters Now from the very beginning, you will understand the significance this photograph is to the life of our charity. Jodi (middle) was born with CMN in 1980. For the first 15 years Jodi and her…
Plain Language Summary of Vitamin D Paper
We have recently studied Vitamin D levels in 40 children with CMN. This study showed us that 40% of the group had low Vitamin D levels and should therefore take a supplement.
CMN through the lens: Using photo-elicitation interviews to explore adjustment in adolescents with a rare birthmark condition
You may remember this News Article we published from Ella Guest, Senior Research Fellow based at the Centre for Appearance Research (CAR), in August 2021. The paper that Dr Ella Guest wrote as her doctoral thesis, based on this work, has now been published in the journal Body Image. The paper concludes “In summary, this…
Last Appointment Card
We are proud to announce our newly designed ‘Last Appointment Card,’ which will mark the end of an era for our members as they visit Great Ormond Street Hospital for the last time and transition to adult services. This card was designed by one of our Young Ambassadors who joined us for work experience in July.
Plain Language Summary of BRAF Fusion Paper
This year the team has just published a really important paper looking at people who hadn’t had a gene identified in their skin – in other words, they didn’t have either the NRAS spelling mistake gene changes or the BRAF spelling mistake gene change.
Caring Matters Now research update September 2023
During this session at our BIG Weekend, we had the privilege of hosting an annual research update from Professor Veronica Kinsler, world leading specialist in CMN.
