Arts syndrome

Organizations

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:

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Where do I find other people with Arts syndrome?

Are there support groups for family members of people with Arts syndrome?

Where do I find other people with Arts syndrome?

Arts syndrome is an extremely rare condition. The medical literature has reported a very small number of patients with Arts syndrome, and these patients have come from fewer than five families (some families had multiple family members affected with Arts syndrome). 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 may be able link you to other families with a disorder of purine metabolism.

There are also online communities for rare disorders such as RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.

References
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:

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