Rare diseases

Phoebe wants other children to be able to have the same treatment for Batten disease as her daughter.

Dan Booth is running five marathons in five days for son Charlie, who has a neurological condition.

Infliximab is the first new drug for patients with pulmonary sarcoidosis for 50 years.

Brineura has added years to the life of an eight-year-old boy with Batten disease, his mother says.

Isaac Tilley, eight, could lose access to Brineura, which slows the progress of Batten disease.

The parents are worried as access to the drug to slow the progress of Batten disease is set to end.

Three-year-old Beau Kent was born with a rare condition meaning he stops breathing when he sleeps.

Geraldine hopes the new NHS network can further diagnosis and treat the rare genetic disease.