America needs more clinics of last resort for patients who can’t get answers - Scorecard - MDSpire

America needs more clinics of last resort for patients who can’t get answers

  • By

  • Alexandra Sifferlin

  • March 31, 2026

  • 0 min

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Clinical Scorecard: The United States Requires Additional Last Resort Clinics for Patients Seeking Answers

At a Glance

CategoryDetail
ConditionArterial calcification due to deficiency of CD73 (ACDC) - a novel disease.
Key Mechanisms
Target Population
Care Setting

Key Highlights

  • UDN has diagnosed over 1,000 patients with rare or unknown conditions since its inception.
  • Patients receive advanced diagnostic tools at no cost, including travel and lodging support.
  • The network serves as a model for addressing rare diseases that lack commercial investment.
  • Emotional support is provided to patients throughout the diagnostic process.

Guideline-Based Recommendations

Diagnosis

  • Utilize a multidisciplinary approach involving geneticists, neurologists, and vascular specialists.
  • Include genetic counseling as part of the diagnostic process.

Management

  • Provide comprehensive evaluations and personalized care plans for undiagnosed patients.

Monitoring & Follow-up

  • Regular follow-ups and assessments to track disease progression and treatment efficacy.

Risks

  • Patients may experience prolonged periods without diagnosis, leading to uncertainty and emotional distress.

Patient & Prescribing Data

Individuals with rare diseases, often after exhausting other medical options.

Access to cutting-edge research and diagnostic tools enhances understanding of rare conditions.

Clinical Best Practices

  • Encourage collaboration among specialists to address complex cases.
  • Prioritize patient empathy and communication to build trust in the healthcare system.
  • Advocate for continued government support for rare disease research.
  • Emphasize patient-centered care and shared decision-making.

References

Original Source(s)

America needs more clinics of last resort for patients who can’t get answers

  • by Alexandra Sifferlin

  • March 31, 2026

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