In recent years, Caring Matters Now has built a strong partnership with the Childhood Tumour Trust (CTT). CTT is a charity that supports children and young people diagnosed with NF1. NF1 is characterized by café au lait birthmarks on the skin and, like CMN, is considered ‘more than a birthmark’, with potential implications beyond the skin.
On 3 December, Vanessa Martin, Founder and CEO of CTT, took some of our leaflets to the Institute of Health Visiting Conference in London, helping to raise awareness of CMN alongside NF1. We are incredibly thankful for this support and for Vanessa’s commitment to raising awareness and improving outcomes for patients.
Parents of children with CMN are encouraged by paediatric dermatologists to map the CMN present on the skin at birth and to monitor and record any changes over time. To support this process and make it easier to share information with medical professionals, CTT created a Body Map Insert for the Personal Child Health Record (PCHR), otherwise known as the ‘Red Book’. CTT very kindly shared this resource with us and gave us permission to adapt and brand the tool specifically for CMN.
We have now created a CMN-specific Body Map Insert to help parents:
- Record the size and placement of their child’s CMN
- Track changes in the number of CMN at 3 and 6 months
- Include a note for medical professionals to refer patients with multiple CMN to the CMN Clinic at GOSH for an MRI
We are proud to feature this resource on our website and to confirm that carbonated copies will be available early this year. These will be sent to our members as part of their Welcome Pack, to share with the medical professionals involved in their child’s care.
This resource is a testament to the power of collaboration between charities, and we look forward to continuing to work in partnership to educate medical professionals about birthmarks, as well as best practice and care for our members.
