Welcome! The Rare Genetic Steroid Disorders Consortium (RGSDC) is an integrated international group of academic medical centers, patient support organizations, and clinical research resources formed to conduct clinical research in genetic disorders of steroid metabolism, to improve the care of individuals affected with these disorders, to train young investigators in the study and care of these disorders, and to serve as a resource of information about these disorders. It is our goal to improve the care of patients with rare genetic steroid disorders.

We Can Help You:

• Become aware of clinical research and clinical trial opportunities
• Connect with patient support groups
• Connect with expert doctors
• Get help in managing these diseases
• Learn more about congenital adrenal hyperplasia, androgen receptor defects, and low-renin hypertension
• Learn about hormonal and genetic factors in steroid disorders

New! RDCRN Makes Contact Registry Available for Download to Facilitate Those Without Internet Access

Learn More about Rare Genetic Steroid Disorders

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Participating Clinical Centers

For Physicians: Frequently Asked Questions

 

What can I do? Take action. Learn more about joining our registry. Research offers no guarantees, but one thing is for certain, research cannot move forward without your help. Every active role a patient takes may play a part in stimulating new, groundbreaking research and finding new treatments. How Can I Help? - Why Your Participation Matters...
Find Information About Current Research Find Patient Support or Advocacy Groups	Current Open Studies: 5601 - The Natural History of Rare Genetic Steroid Disorders: Apparent Mineralocorticoid Excess (AME) 5607 - Modifier Genes in 21-Hydroxylase Deficiency

The Disorders We Study:

Disorders of Androgen Excess:

• 21-Hydroxylase deficiency
• 11b-Hydroxylase deficiency
• Other 46,XX Defects of Sexual Differentiation

Disorders of Androgen Synthesis or Action:

• Steroid 17a-Hydroxylase deficiency
• Steroid 17b-Hydroxysteroid dehydrogenase deficiency
• Androgen Receptor Defects
• 5a-Reductase 2 deficiency
• Steroid 3b-Hydroxysteroid dehydrogenase deficiency

Low-Renin Hypertension:

• Apparent Mineralocorticoid Excess

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Term Glossary

Links and Other Resources

Frequently Asked Questions