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Not the least of problems associated with severe combined immunodeficiency (SCID) are the grief and solitude felt by the patient's parents. Because SCID is such a rare disease, these parents are often alone, at least when they come to visit their child at the hospital.
But being alone on a hospital ward does not have to mean solitude, especially for the 800 or so members of a national nonprofit organization, the Immune Deficiency Foundation. Founded three years ago by Marcia Boyle to develop a support network, the foundation's membership comprises family, friends, nurses, and physicians of patients with any of the primary immunodeficiency diseases. (Boyle, who is president of the organization, says she has had "very few" inquiries from patients or families of patients with acquired immunodeficiency syndrome [AIDS], probably because there are so many support groups devoted solely to them.)
The Immune Deficiency Foundation's ultimate goals are "to support
Simmons K. Immune Deficiency Foundation: medical research, awareness. JAMA. 1984;251(15):1929–1931. doi:10.1001/jama.1984.03340390003002