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Rare Disease Day – 28 Feb 2015

28 February 2015 is Rare Disease Day. The theme for this year is: Living with a rare disease A rare disease, also referred to as an orphan disease, is a life-threatening or chronically debilitating disease that affects a small percentage of the population. As a group, rare diseases are not uncommon however at least 75 per …continue reading »

Add your support to the Access Our Medicine Initiative

ICPCN is proud to support the Access Our Medicine Initiative. To date they have collected over 90,000 signatures for affordable medicine and we know our community can help them reach 100,000 signatures.  We are asking you to take 2.5 seconds to add your voice for affordable medicine for all, including children, at

HIV response is failing teens across southern Africa

A multi-country study undertaken to explore and document the current psychosocial and sexual reproductive health needs of adolescents living with HIV in southern Africa has found that adolescents across Southern Africa face barriers to HIV prevention and treatment, contributing to increasing AIDS-related deaths in this age group. The regional study has highlighted areas where the …continue reading »

Meet Lucy Watts, ICPCN’s first Youth Ambassador

The ICPCN is thrilled to announce the appointment of Lucy Watts as their first Youth Ambassador. Lucy, a 21 year old from the UK, who despite being disabled and living with a chronic, life limiting illness, has already made an enormous impact on the world through her writing and speaking activities. Diagnosed with Ehlers-Danlos Syndrome …continue reading »

A 15 minute survey for carers of seriously ill children

Being the parent of any child is a full-time job. Being the parent of a child who is clinically fragile is overwhelming in ways most people cannot begin to imagine. This is physically and mentally exhausting. We get that. Trying to give an ill child everything he or she needs without allowing siblings to feel overlooked …continue reading »