There are no drug treatments available for approximately 95 percent of the nearly 7,000 identified rare diseases. There is, however, a way to improve the quality of life of children living with serious and life-limiting illnesses: pediatric palliative care. This is provided by an interdisciplinary team, including physicians, nurses, and social workers, who work closely with the family and primary care providers.
Palliative care is often misunderstood. People associate it with end-of-life care, hospice care, or “giving up” – especially when facing a serious health challenge. But this is not the case. This toolkit addresses this misconception, providing an introduction on this care option, how it benefits the family, and how to gain access and learn more.