Are there support groups for family members of people with Arts syndrome?
While there are no specific support groups for family members of people with Arts syndrome, there are support groups that offer help and support for people living with chronic or disabling medical conditions and their families. Some examples include:
- My Life Without Limits (MLWL) is the go-to site for individuals with disabilities. In addition to news and resources, you'll find ways to connect, ask questions, exchange advice and share information among people with a range of disabilities.
- Compassionate Friends provides grief support after the death of a child
- Family Voices promotes quality health care for all children and youth, particularly those with special health care needs
Family members of people with Arts syndrome may also be able to find support through The Purine Metabolic Patients' Association, or PUMPA, based in the United Kingdom. PUMPA 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 families of people with Arts syndrome may find helpful are specific to the symptoms seen in Arts syndrome. Some of these include: