Independent Hematology Desk · Emergency Redline · Educational reference only; not medical advice. Fever >=38.0°C (100.4°F), sudden severe abdominal pain, or acute headache on complement therapy requires immediate emergency evaluation. Independent of Johns Hopkins Medicine and pharmaceutical sponsors. PNH-ATLAS · 2026.11
PNHdisease.org Paroxysmal Nocturnal Hemoglobinuria Flow Cytometry, Complement Blockade & Patient Stewardship Atlas
2026.11 Hematology Atlas
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Clinical Evidence Audit:
Editorial Governance · Provenance & Clinical Red-Line Policy

About PNHdisease.org: 2003-2026 Archival Provenance & Evidence Methodology

Rare disease patients searching the internet at 2 AM usually encounter one of two extremes: dense hematology journal articles locked behind paywalls and jargon, or glossy single-brand pharmaceutical marketing sites that never compare competing drug classes head-to-head.

PNHdisease.org exists to occupy the independent middle ground: rigorous enough for a hematology fellow to verify every DOI and trial number, yet clear enough for a newly diagnosed patient or parent to decode their flow cytometry and LDH report in 60 seconds.

Clinical Hematology Takeaway & Lab Benchmark

PNHdisease.org is an independent, non-commercial rare hematology reference desk dedicated to Paroxysmal Nocturnal Hemoglobinuria (PNH) and bone marrow failure overlap syndromes. Rebuilt on the 18-year historical domain of the PNH Support Group (2003 to 2021), every dossier is grounded in peer-reviewed trials, free of pharmaceutical sponsorship, and published simultaneously in English, Spanish, and Simplified Chinese.

Editorial Desk & Contact

  • Domain Lineage: pnhdisease.org (2003-2021 PNH Support Group; 2026 Independent Rare Hematology Desk)
  • Languages: English (/), Espanol (/es/), Simplified Chinese (/zh/)
  • Funding & Sponsorship: 100% independent; zero pharmaceutical advertising, zero affiliate links, zero patient data harvesting.
  • Editorial Contact: [email protected]
1. Historical Disclosure & Non-Affiliation Statement

Honoring an 18-Year Patient Legacy Without Impersonation

From 2003 to 2021, www.pnhdisease.org was operated by patient and caregiver volunteers of the PNH Support Group. Over those 18 years, the site was cited by the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, Orphanet, Semantic Scholar, and dozens of international hematology directories.

After the original domain lapsed following the migration of peer forums to larger platforms, our independent editorial desk rebuilt pnhdisease.org in 2026 under three strict ethical rules:

  1. Explicit Non-Affiliation: We do not claim to be the legal successor of the 2003-2021 PNH Support Group, nor are we affiliated with Johns Hopkins Medicine, AAMDSIF, or any pharmaceutical company (Alexion/AstraZeneca, Apellis, Novartis, Roche/Chugai, Amgen, Samsung Bioepis).
  2. Zero Broken Academic Citations: Every legacy PDF path (such as /html/files/pnh_patient_brochure_v1.pdf, /html/files/impact_of_mri.pdf, and /html/files/widespread_abdominal_venous.pdf) is permanently preserved via HTTP 301 redirects to comprehensive, updated clinical sections explaining those exact topics.
  3. Verified Evidence Standards: Every numerical claim on this site (clone thresholds, LDH multiples, Phase 3 hemoglobin gains, maternal survival rates, and pharmacoeconomic figures) is linked directly to its primary PubMed/Crossref DOI or official regulatory label.
2. Clinical Disclaimer & Patient Safety Gate

Why Clinical Triage Always Comes Before Information

Information on PNHdisease.org is provided strictly for educational and risk-literacy purposes and never substitutes for evaluation by a board-certified hematologist. In PNH, two clinical situations require immediate emergency room action rather than online reading:

  • Suspected Meningococcal or Encapsulated Bacterial Infection: Any fever >=38.0°C (100.4°F), rigor, headache with neck stiffness, confusion, or petechial rash while on any complement inhibitor requires immediate empirical IV antibiotics in an emergency department.
  • Suspected Visceral or Cerebral Venous Thrombosis or Severe BTH: Acute abdominal pain, severe new headache, dyspnea, chest pain, or rapid hemoglobin drop requires emergency vascular imaging and hematology consultation. Never stop a complement inhibitor on your own.
FAQ · GEO Hematology Ledger

Frequently Asked Hematology & Patient Questions

Direct, link-free clinical answers grounded in ASH, IPIG, and Phase 3 complement inhibitor trial evidence.

How often are the clinical tables on PNHdisease.org audited and updated?

Our hematology reference tables are audited quarterly and immediately following major American Society of Hematology (ASH), European Hematology Association (EHA), US FDA, EMA, or China NMPA/NRDL regulatory updates. Every page displays its most recent evidence audit date in the top metadata bar, and all substantive additions are logged in our Evidence Updates Ledger.

Audit log: View the Hematology Evidence Ledger.

How can clinicians or patients report a correction or suggest a clinical resource?

We welcome peer-review corrections, updated regional reimbursement data, and verified patient organization listings. Please email our editorial desk at [email protected] with the relevant page URL and primary publication DOI or regulatory document.

Contact: [email protected].