NECUK – Neuroendocrine Cancer UK

NEC UK was established in 2012 as an informal social media group by Susan Spencer, following the tragic loss of her son Tobias to Necrotising Enterocolitis (NEC) at just six days old. Recognizing the need for a dedicated support space for families affected by NEC, Susan, alongside fellow parent Sam Wallace, expanded the initiative into a formal charity. In April 2017, NEC UK began the process of becoming a registered charity, achieving this status in December 2018. The organization is headquartered in the UK and operates as a registered charity under the number 1181026.

NEC UK exists to preserve and protect the physical and mental health of families affected by Necrotising Enterocolitis. The organization aims to support research and studies into NEC, advocate for improvements in neonatal care, and raise public awareness and understanding of the condition.

NEC UK specifically supports families affected by Necrotising Enterocolitis, including those with premature infants and full-term babies with underlying health issues such as heart conditions or bowel abnormalities.

The organization engages in several primary activities, including:

• Advocacy for improved neonatal care practices
• Educational initiatives to raise awareness about NEC
• Direct support programs for affected families

NEC UK provides a range of support services to patients and their families, including:

• Information hotlines and online support groups
• Consultations and educational materials
• Workshops and family meet-up events
• Practical support through care packs and nappy support for families with high usage due to NEC-related complications

Since its inception, NEC UK has successfully transitioned from an informal support group to a registered charity, enabling it to offer more structured support to families. The organization has also established a medical advisory panel and facilitated family days to foster community and support among affected families.