National Gitelman Association · NGA

Raising awareness.
Serving our community.
Funding breakthroughs.

The National Gitelman Association is dedicated to improving the lives of everyone affected by Gitelman syndrome — a rare inherited kidney condition that goes undiagnosed for years in most patients.

The National Gitelman Association (NGA)

Our Mission

We exist because Gitelman syndrome — a manageable, diagnosable condition — remains unknown to most physicians and undiagnosed in most patients for years. The NGA is changing that through education, advocacy, community, and research.

Raise Awareness

Educating patients, physicians, and the public so Gitelman is recognized and diagnosed faster.

Serve Our Community

Providing trusted resources, tools, and support for patients, caregivers, and families worldwide.

Fund Research

Directing resources toward breakthroughs in diagnosis, treatment, and quality of life for Gitelman patients.

Connect Globally

Building a worldwide network of patients, specialists, and advocates across all borders.

What are you looking for?

Resources for patients, caregivers, and clinicians — all in one place.

What is Gitelman Syndrome?

Gitelman syndrome is a rare autosomal recessive kidney disorder caused by loss-of-function mutations in the SLC12A3 gene, which encodes the thiazide-sensitive sodium-chloride cotransporter (NCC) in the distal convoluted tubule. This results in chronic urinary wasting of potassium and magnesium.

It is estimated to affect approximately 1 in 40,000 people worldwide, though many remain undiagnosed for years. Most patients are diagnosed in adolescence or adulthood, often after years of unexplained symptoms.

  • Rare autosomal recessive condition — both SLC12A3 copies must be mutated
  • Causes chronic hypokalemia and hypomagnesemia
  • Characterized by low urinary calcium (hypocalciuria)
  • Usually presents in adolescence or adulthood
  • Manageable with electrolyte supplementation and monitoring
  • Does not typically progress to kidney failure

Blanchard A, et al. Gitelman syndrome: consensus and guidance from a KDIGO Controversies Conference. Kidney Int. 2017;91(1):24–33. PMID: 28003083. View on PubMed

1 in 40K
Estimated global prevalence
SLC12A3
Causative gene — NCC transporter
↓ Mg²⁺
Hypomagnesemia — key diagnostic hallmark
↓ Ca²⁺ᵤ
Hypocalciuria — distinguishes from Bartter
Good Prognosis
Most patients lead full, active lives with proper electrolyte management. Early diagnosis and regular nephrology follow-up are key. Gitelman syndrome does not typically cause kidney failure.

Knoers NV & Levtchenko EN. Gitelman syndrome. Orphanet J Rare Dis. 2008;3:22. PMID: 18667063. View on PubMed

Signs & Symptoms

Gitelman syndrome presents with a characteristic combination of physical symptoms and laboratory findings. Presentation is variable — some patients are nearly asymptomatic while others experience significant disability.

Physical Symptoms

  • Muscle weakness and fatigue
  • Muscle cramps and pain
  • Salt cravings
  • Frequent urination (nocturia)
  • Dizziness or fainting (presyncope)
  • Tingling or numbness (tetany/paresthesias)
  • Palpitations
  • Constipation

Laboratory Findings

  • Low magnesium (hypomagnesemia) — often <0.7 mmol/L
  • Low potassium (hypokalemia)
  • Urinary potassium wasting
  • Low urinary calcium (hypocalciuria) — key feature
  • Normal or low blood pressure
  • Metabolic alkalosis
  • SLC12A3 mutations on genetic testing
Clinical Sources Symptoms and laboratory criteria based on: Blanchard A, et al. Consensus for diagnosis and treatment of Gitelman's syndrome. NDT 2017; Cunha TDS & Heilberg IP. Gitelman syndrome: newly discovered pathogenic mutations, neurological manifestations, and management guidelines. TCRM 2018. doi:10.2147/TCRM.S134620

The Pattern That Gets Missed

Most Gitelman patients see multiple physicians over many years before receiving a correct diagnosis. The lab pattern is recognizable — if you know what to look for. Here's the key:

↓ K⁺ (urinary wasting) + ↓ Mg²⁺ + ↓ Urine Ca²⁺ + Normal/↓ BP Think Gitelman

When to Suspect

  • Unexplained hypokalemia + hypomagnesemia
  • Salt cravings + muscle cramps
  • Adolescent/adult onset symptoms
  • Family history of similar labs
  • Normal BP with significant hypokalemia

Confirm With

  • Spot urine Ca²⁺:creatinine ratio
  • Urinary K⁺:creatinine ratio
  • Serum renin & aldosterone
  • SLC12A3 genetic testing
  • Nephrology referral

Initial Management

  • Oral magnesium supplementation
  • Potassium supplementation if K⁺ <3.0
  • Salt-liberal diet (do NOT restrict Na⁺)
  • Avoid NSAIDs and thiazides
  • Refer to nephrology

Join the NGA

There are many ways to contribute to the Gitelman community — whether you are a patient, caregiver, clinician, or researcher.

Share Your Story

Your experience with Gitelman syndrome — diagnosis, daily life, what helped — can guide and comfort others who are newly diagnosed.

Submit your story

Refer a Specialist

Know a nephrologist, geneticist, or rare disease physician with Gitelman experience? Help us grow our global specialist directory.

Submit a listing

Join the Medical Advisory Board

We are assembling an international board of nephrologists, geneticists, and rare disease specialists to guide clinical content.

Express interest

Spread the Word

Share gitelman.org with your physician, your hospital, your patient community. Awareness is the first step toward faster diagnosis.

Share with your network

Participate in Research

We are building a patient registry to characterize Gitelman syndrome at a population level. Your data could shape future treatment.

Register interest

Donate

Financial contributions support the NGA's mission to raise awareness, fund research, and serve the global Gitelman community.

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The NGA provides educational information only. All clinical content is based on peer-reviewed literature (cited throughout). This does not constitute medical advice. Always consult a qualified healthcare provider.