Spinal Muscular Atrophy Program
Children with spinal muscular atrophy (SMA) need care from experts in several medical fields. The Spinal Muscular Atrophy Program at Children’s Hospital Boston brings together a comprehensive team of specialists who are experienced in caring for children with SMA
We hold a dedicated SMA clinic once a month so that your child can receive all of his or her SMA-related care in a single visit. This multi-disciplinary approach means that our various specialists work closely with each other and with your family so that your child’s care is well coordinated.
Physicians and researchers at Children’s Hospital make clinical innovation and research on SMA a priority. We work every day to improve the care we provide to our patients and their families.
Bringing children with SMA to an emergency room and having them seen by providers who aren’t familiar with their condition can be overwhelming. Our team has devised an SMA Passport to help inform all providers about your child’s unique needs. The passport includes basic information on SMA and special needs that your child may have. It can be customized to include medications, doctor contact information, and other important information.
Children?s is part of a multi-center SMA research network
Children’s is one of three centers that make up the Pediatric Neuromuscular Clinical Research (PNCR) Network for SMA. The group is conducting clinical research with the goal of offering a medication trial in the near future.