We are rare disease nurses, genetic counsellors, parents to children with rare disease, people that have rare diseases ourselves or people who are passionate about making a positive difference.
Our aim is to become the “Macmillan of Rare Disease”; we are determined to create better services for those affected by rare diseases and improved information for nurses, and other healthcare professionals, to help them provide stronger support for their patients.
To provide a network of specialist nurse support for every person with a rare disease.
To deliver innovative support to nurses (and other healthcare professionals) involved in rare disease, so that they are more empowered to provide better help for rare disease patients and families on their rare disease pathway.
To establish a network of specialist nurses globally providing support and care for everyone affected by a rare disease.
We are in need of your support so that we can continue to support patients and their families with rare disease.Contact us