Child to Adult Support Pathway

0-4 Years

We provide specialised early-years support and information for parents caring for babies born with CMN. Parents of a newborn with CMN are offered a one-hour initial support consultation with our Head of Support. From October to March, we host a monthly online baby and toddler group.

We are committed to educating medical professionals to aid early diagnosis, with a particular focus on partnering with midwives and dermatologists across the UK and Ireland. Our Red Book Insert was created to support early diagnosis and provide clear medical signposting.

5-11 Years

We support families throughout the primary years by offering age-specific support literature, our Schools Guide, connections with our Peer Support Team, and access to family-friendly regional events.

We host bi-monthly Online Workshops exploring topics related to CMN, each stage of our Support Pathway, and the questions that matter most to our members at each life stage.

We are currently developing an Infant Primary Online Community for 5–8-year-olds, which will meet once per month between October and March.

12-16 Years

When a child member turns 12, they begin receiving direct support from our Teens Contact Team, which includes both a male and female volunteer. Teenage members are invited to participate in Level One of our Young Ambassadors Programme and to attend teen support events. We also provide support guides for those caring for teenagers living with CMN.

Teenage members have access to our Online Teens Resource designed to improve self-esteem and confidence, with the option to work through the resource alongside our Head of Support.

17-24 Years

At age 17, members transition to receiving direct support from our Young Adults Contact, who helps guide them from child membership into adult membership. Young adult members are invited to participate in Level Two of our Young Ambassadors Programme and to attend young adult support events.

We have created a Self-Advocacy Pack to equip young adults with the knowledge and tools needed to manage their healthcare, communicate their needs, and navigate adult healthcare services effectively.

18+ Years

Young adults are encouraged to register as adult members rather than continuing under a parent’s registration. Adult members have access to our Adult Contact Team, are invited to adult support events, and may participate in adult-focused research studies.

Adults experiencing new concerns related to their CMN, or those wishing to identify the genetic mutation responsible for their CMN, can be referred to the Adult Clinic at St Thomas’ Hospital, London.

Additional Support

Any member experiencing a new problem related to their CMN is welcome to book a one-hour Support Consultation with our Head of Support.