PNH Support Group Archive (2003-2021) & Global Patient Community Directory
When a disease affects only 1 to 2 people per million per year, a patient's local hospital rarely has a peer support group down the hall. In 2003, four years before the first complement inhibitor (Soliris) was approved by the FDA, patients and caregivers launched www.pnhdisease.org (PNH Support Group) as an open online sanctuary and educational library.
For 18 continuous years (2003 to 2021), academic hematology departments including Johns Hopkins Medicine, international registries like Orphanet, and global patient portals linked directly to pnhdisease.org. This page documents that 18-year legacy and directs every visitor arriving from a historical link to both the updated 2026 clinical dossiers and today's active patient advocacy charities.
From 2003 to 2021, pnhdisease.org operated as the online home of the PNH Support Group, connecting patients and caregivers before and after the first complement inhibitor approval in 2007. This archival page preserves the legacy URL pathways cited by Johns Hopkins Medicine, Orphanet, Semantic Scholar, and Marrowforums, and connects families to verified active international patient advocacy organizations.
Where Did the Original 2003-2021 PNHdisease.org Documents Move?
Every historical PDF brochure, radiological reprint, and forum entry point from the 2003-2021 www.pnhdisease.org site has been mapped via permanent HTTP 301 redirect to its updated 2026 clinical counterpart:
| Historical URL on pnhdisease.org | Original Document Title & Era | Notable Academic / Institutional Citations | 2026 Updated Dossier Destination |
|---|---|---|---|
| https://www.pnhdisease.org/ /index.php |
PNH Support Group Home & Online Forum (2003-2021) | Johns Hopkins Medicine, Medinfos France, Marrowforums, AAMAC Canada, PNHSANZ New Zealand, Orphanet UK, and 32 links from Hemoglobinuria Paroxistica Noturna blog. | PNH Hematology & Complement Atlas Home + Global Patient Community Directory |
| /html/files/pnh_patient_brochure_v1.pdf | "Living With PNH" Patient Educational Brochure (v1) (2008-2020) | Cited by PicnicHealth PNH Care Portal, peer-reviewed journal Biotechnol. & Biotechnol. Equip. (Yilmaz et al. 2016), and 5 medical blogs. | Living With PNH: Nitric Oxide Fatigue, Iron Paradox & Vaccines |
| /html/files/impact_of_mri.pdf | Impact of MRI in Paroxysmal Nocturnal Hemoglobinuria (Prof. H. Rochant et al.) | Indexed and linked by Semantic Scholar (Allen Institute for AI). | Flow Cytometry & Renal Cortical Hemosiderosis MRI/CT Signs |
| /html/files/widespread_abdominal_venous.pdf | Widespread Abdominal Venous Thrombosis & Hemoglobinuria Diagnosed on CT | Cited across radiological & abdominal pain case discussions under anchor "Hemoglobinuria Diagnosed On CT". | CT Splanchnic Thrombosis & Renal Cortex Dossier + Budd-Chiari ER Guide |
Verified International PNH & Bone Marrow Failure Patient Organizations (2026)
While PNHdisease.org now operates strictly as an open-access trilingual clinical reference desk (and does not host a private login forum or collect patient health data), we strongly encourage patients and caregivers seeking peer-to-peer support, patient conferences, and financial aid to connect with these verified non-profit organizations:
North America (USA & Canada)
AAMDSIF · AAMAC · MARROWFORUMS- Aplastic Anemia and MDS International Foundation (AAMDSIF): Primary US & international non-profit offering peer support networks, webinars with PNH specialists, and financial grants.
- Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC): Bilingual (EN/FR) Canadian support network for AA, MDS, and PNH patients.
- Marrowforums (PNH Discussion Forum): Long-standing active peer forum where patients discuss complement inhibitor switches and lab trends.
United Kingdom, Europe, Spain & Asia-Pacific
PNH UK · HPN ESPANA · PNHSAA- PNH Support (England, Wales & NI) & PNH Scotland: Dedicated UK patient charities working alongside the NHS National PNH Service.
- Asociacion HPN Espana: Spanish national association for Hemoglobinuria Paroxistica Nocturna patients and families.
- PNH Support Association of New Zealand (PNHSANZ) & PNHSAA Australia: Australasian PNH patient advocacy networks.
- Rare Disease Hong Kong (RDHK): Asia-Pacific rare blood disorder patient alliance.
Frequently Asked Hematology & Patient Questions
Direct, link-free clinical answers grounded in ASH, IPIG, and Phase 3 complement inhibitor trial evidence.
Is PNHdisease.org affiliated with the original 2003-2021 PNH Support Group board or pharmaceutical companies?
No. As disclosed across our site header, footer, and About page, the original PNH Support Group volunteer forum operated from 2003 to 2021. In 2026, PNHdisease.org was rebuilt and is maintained by an independent clinical hematology editorial desk to preserve 18 years of academic citations and provide free, non-commercial, trilingual clinical reference tools. We have zero legal affiliation with the former organization, Johns Hopkins Medicine, or any pharmaceutical manufacturer.
Clinical governance: See About & Historical Disclosure and 2026 Rebuild Manifesto.
Where can I find active peer-to-peer discussion forums for PNH patients today?
For live peer discussion threads, we recommend Marrowforums (marrowforums.org), the AAMDSIF Peer Support Network (aamds.org) in North America, PNH Support (pnhuk.org) in the United Kingdom, and Asociacion HPN Espana (hpnespana.org) for Spanish-speaking patients.
Community links: All external organizations are listed in the verified table above.