Are there good support groups for Arts syndrome?
While there are no support groups that are specifically for Arts syndrome, there are several support groups that Arts syndrome patients and their families may find helpful. The Purine Metabolic Patients' Association, or PUMPA, based in the United Kingdom, offers support to patients and their families who are living with a purine metabolic disorder, like Arts syndrome. Arts syndrome is considered a purine metabolic disorder because people with Arts syndrome cannot make purines correctly. Purines are molecules that are needed to carry out many basic cell functions in our body. PUMPA aims to support patients with purine metabolic disorders and their families in three ways:
- By providing information about purine metabolic disorders to patients and their families
- By increasing knowledge about purine metabolic disorders
- By supporting scientific research about purine metabolic disorders
Other support groups that patients with Arts syndrome and their families may find helpful are specific to symptoms seen in the condition. Some of these include: