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Welcome to the website for the PNH (Paroxysmal Nocturnal Hemoglobinuria) support group. Although there is an abundance of resources on this site, our aim is not to inundate the reader with medical information, but to provide support and to share the personal experiences of the members who are afflicted with, or care about someone with this condition.

We are not medical specialists, but due to the rarity of the disease, the combined knowledge of our 400+ members is a huge benefit to all who join our group. If you have recently been diagnosed with PNH, or know someone who has, this group is a wonderful source of information.

Our members area has lots of information available and there is no need to register for an account if you don't want to. Feel free to read the Frequently Asked Questions, check out the medical terms in the Glossary, or access medical articles in the Files section. There is also an abundance of Web Links to other sites with information about PNH.


Glossary of
PNH Terms




News Feeds

Channel: News4Sites - Hematology
Blood Testing, Mosquito Style
Sciencedaily.com - Sat Apr 25, 07:30 pm GMT
Defense says new blood test clears Texas man
Ksla.com - Sat Apr 25, 06:15 pm GMT
Health Tip: Blood Tests During Pregnancy
Wave3.com - Thu Apr 23, 02:12 pm GMT
Blood test 'would've saved Bethany's life'
Metro.co.uk - Wed Apr 22, 02:19 pm GMT
Urology clinic jammed with patients seeking blood tests
Siouxcityjournal.com - Fri Apr 17, 07:20 pm GMT
Businessman Exposed Problems With Quest Subsidiary's Blood Test Kits; Led to $302 Million Settlement
Biz.yahoo.com - Wed Apr 15, 06:20 pm GMT
Sun Sentinel Watch: Insurer's mistake results in big bill for blood tests
Sun-sentinel.com - Tue Apr 14, 06:57 pm GMT
Blood Tests Reveal Tobacco Smoke Residues In Non-smoking New Yorkers
Sciencedaily.com - Thu Apr 9, 06:58 pm GMT
Farrah Fawcett suffering from Hematoma; Wants fans to hold on to hope
Ksla.com - Mon Apr 6, 06:57 pm GMT
Lawyers challenge DWI blood testing
Statesman.com - Sun Apr 5, 04:59 pm GMT
Channel: BloodMed.com News
CERN set to step up alpha therapy production
European scientists say they may be able to produce "practically unlimited" amounts of two nuclides that have been found to be promising for cancer treatment.
Sea sponge molecule may fight?AML
Scientists are investigating the possible use of a molecule isolated from sea sponges for the treatment of?leukemia.
MicroRNA key to myeloma test
Scientists have unveiled proposals for a new test that could speed up early diagnosis of multiple myeloma.
DNA avenue for sickle cell therapy
Scientists may have discovered a new strategy for tackling sickle cell disease.
Babies 'unharmed' by maternal cancer treatment
The children of mothers who receive cancer treatment during pregnancy do not seem to suffer ill-effects, according to a European study.
Overcrowding linked to reduce Hodgkin risk
Children brought up in overcrowded homes seem to enjoy protection against some forms of Hodgkin lymphoma, British researchers have reported.
Cheap, reliable drug cuts transfusions
Blood transfusions during hip or knee replacements may be prevented with an inexpensive drug, researchers state.
Sickle cell cure hopes
A new bone marrow transplant procedure has successfully treated adult patients with sickle cell disease, it has been announced.
Microbiome linked to sickle crisis
Antibiotics may help treat sickle cell patients during crises by depleting the microbiome, according to US researchers.
Social factors impact leukemia patients' survival
Insurance status, marital status, and income could affect the survival chances of young people with acute myelogenous leukemia, a new US report has claimed.
Channel: NBC News Health
Ebola Nurse Flown Back to Hospital with 'Complication'
Ebola has been detected again in British nurse Pauline Cafferkey, who was thought to have made a full recovery earlier this year.

Researchers Say Gene Changes Show Who's Gay
U.S. researchers say they've come up with a formula that can show someone's sexual orientation by looking at genetic changes.

Why Elephants Don't Get Cancer
Elephants live a long time but they don't get cancer like people do. Scientists think they know why.

Researchers Grow Kidney, Intestine From Stem Cells
Two teams of researchers have grown rudimentary organs from stem cells: a primitive kidney and the beginnings of an intestine.

Why Cancer Docs Are Spurning Pricey Drugs
U.S. oncologists, aware that patients are paying more of the costs of expensive cancer drugs, are increasingly declining to prescribe medicines that have scant or no effect, even as a last resort

Could Obesity Surgery Raise the Risk of Suicide?
Patients may be more likely to harm themselves or attempt suicide after weight-loss surgery, a Canadian study suggests.

Thyroid Cancer Rates Higher in Kids Near Fukushima Nuke Plant - Study
A new study says children living near the Fukushima nuclear meltdowns have been diagnosed with thyroid cancer at a rate 20 to 50 times that of childre

World's Oldest Woman Would 'Eat Bacon All Day Long'
Susannah Mushatt Jones, 116, would "eat bacon all day long" if she had her say, her niece reportedly said.

Cystic Fibrosis Drugs Save Lives, If You Can Afford Them
New drugs for treating the genetic lung disease are being hailed as breakthroughs, but at a cost up to $300,000 a year, few can afford them.

Can We Eat Butter and Salt? House Members Question Diet Guidelines
The top federal health and agriculture officials defended the government's dietary guidelines against an assault by a powerful Congressional committee.

Channel: Medscape Hematology-Oncology Headlines
New Guidelines for Primary Palliative Care in OncologyNew Guidelines for Primary Palliative Care in Oncology
The new guidance statement comes from the American Society of Clinical Oncology and the American Academy of Hospice and Palliative Medicine.
Medscape Medical News
OK for Flu Shot With Nivolumab, Other Checkpoint Inhibitors?OK for Flu Shot With Nivolumab, Other Checkpoint Inhibitors?
Is it safe and effective to give a flu shot to cancer patients on new immunotherapies?
Medscape Medical News
Compression Device Benefits LymphedemaCompression Device Benefits Lymphedema
In this retrospective analysis of both cancer and noncancer patients with lymphedema, use of an advanced pneumatic comprssion device reduced cellulitis and outpatient care.
Medscape Medical News
Why Elephants Don't Get Cancer, at Least Not OftenWhy Elephants Don't Get Cancer, at Least Not Often
In an analysis of necropsy data, elephants have been found to have lower than expected rates of cancer. Does the acquisition of multiple copies of the TP53 gene explain this?
Medscape Medical News
USPSTF Issues Draft of New Colon Cancer Screening GuideUSPSTF Issues Draft of New Colon Cancer Screening Guide
The US Preventive Services Task Force has posted new draft recommendations for colorectal cancer screening and is seeking online feedback; not everyone is happy with them.
Medscape Medical News
They Searched 'Tanning' and Skin Cancer Ad IntervenedThey Searched 'Tanning' and Skin Cancer Ad Intervened
Seekers of tanning beds were presented with online messages about skin cancer before they even got close to lying down.
Medscape Medical News
Gastric Cancer Trial Asks 'Globally Significant Question'Gastric Cancer Trial Asks 'Globally Significant Question'
The first part of the TOPGEAR trial has shown that preoperative chemoradiation is safe and feasible, but will it improve survival?
Medscape Medical News
Readmission After Pulmonary Resection: Scoping the ProblemReadmission After Pulmonary Resection: Scoping the Problem
As quality improvement efforts focus on decreasing readmission rates, surgeons evaluate the readmissions seen following pulmonary resections.
Medscape Medical News
Tumor Stage Still Influences Survival in Breast CancerTumor Stage Still Influences Survival in Breast Cancer
In the modern era of increasingly improved breast cancer treatment, tumor factors at diagnosis still influence survival.
Medscape Medical News
Laparoscopic Surgery for Rectal Cancer? Not Yet, Say TrialsLaparoscopic Surgery for Rectal Cancer? Not Yet, Say Trials
The emergent surgical approach failed to show it was noninferior to the traditional approach of open resection.
Medscape Medical News


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