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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
Hope for improved stem cell production
New discoveries could lead to a more efficient method of stem cell production for transplantation, according to Canadian scientists.
New genetic variants linked to myeloma
Eight new genetic variations in the human genome have been identified that could demonstrate an inherited predisposition to myeloma.
How MGUS becomes myeloma
Changes in the bone marrow have been identified that could prevent myeloma from developing.
Myeloma patients' views sought in survey
Some 500 myeloma patients in the UK have taken part in a survey of their perspectives on the benefits and risks of treatments and how this can be used by medical regulators.
Blood donor link to dementia ruled out
Blood transfusions are not responsible for transmitting neurodegenerative diseases, according to a major Scandinavian study.
Infant leukemia discovery in Edinburgh
The cells causing an aggressive type of leukemia that can develop before birth have been identified for the first time.
Thalidomide mechanisms unravelled.
German researchers have unravelled the way that thalidomide and related drugs work, it has been announced.
Chronic leukemia protein discoveries
German scientists investigating chronic myeloid leukemia have carried out two new studies on its genetic origins.
Stem cells key to AML aggressiveness
Acute myeloid leukemia affects different kinds of stem cells - and this is responsible for its level of aggressiveness, according to Swiss researchers.
Epigenome study yields CLL insights
British and Austrian researchers have identified a "network" of epigenetic changes linked to chronic lymphocytic leukemia, it has been announced.
Channel: NBC News Health
Any Kind of Sex Can Spread Zika, CDC Says
Any kind of sex can spread the Zika virus, federal health officials said Monday in updated guidance for pregnant women.
More Than a Million Moms At Risk of Zika, Study Finds
As many as 1.65 million women in Latin America could be infected with Zika while pregnant, meaning tens of thousands of pregnancies could be at risk,
Brain Games Might Cut Alzheimer's Risk
A computerized brain training program cut the risk of dementia among healthy people by 48 percent.
Trump Is Appealing to Fear ? Will it Win Him Votes?
Donald Trump appears to be pushing fear buttons that common wisdom says motivates conservatives. But is that really what's going on?
Toxic Algae Closes Utah Lake, Sickens 100
The bacteria commonly known as blue-green algae has spread rapidly to cover almost all of 150- square-mile Utah Lake, turning the water bright green.
Can I Ever Get Pregnant? Your Questions About Zika
There are new recommendations on pregnancy, sex and the risk of Zika virus.
Florida May Have Second Non-Travel-Related Case of Zika
Florida has a second possible case of Zika spread locally, and scientists said they may have found a new species of mosquito can transmit the virus.
How Worried Should You Be About the Zika Virus?
It's winter in South America and Zika fears there are winding down, just as mosquito season starts in North America. Here are some Zika answers.
Pokemon Go Takes Over Children's Hospital
Pokemon Go has kids all over moving around, but it's a special treat for kids stuck in the hospital.
U.S. Moves to Block Health Insurance Mergers
The Justice Department went to court Thursday seeking to block two mergers involving four of the nation's five health insurance giants.
Channel: Medscape Hematology-Oncology Headlines
First ASCO Guidelines for Chronic Pain in Cancer SurvivorsFirst ASCO Guidelines for Chronic Pain in Cancer Survivors
New ASCO guidelines describe how to create a comprehensive pain management plan for cancer survivors, including use of opioids and how to get patients off them.
Medscape Medical News
EU Gives OK to Liposmal Irinotecan for Pancreatic CancerEU Gives OK to Liposmal Irinotecan for Pancreatic Cancer
The novel pegylated liposomal formulation of irinotecan (Onivyde) has been recommended for approval for use in combination with 5-fluorouracil and leucovorin.
News Alerts
New Neurotoxicity From Immunotherapy for Advanced Melanoma?New Neurotoxicity From Immunotherapy for Advanced Melanoma?
Two cases of severe demyelinating polyradiculoneuropathy linked to pembrolizumab prompt calls for increased awareness of this 'devastating' complication.
Medscape Medical News
12 Chemo Cycles: More Toxicity Than Therapy?12 Chemo Cycles: More Toxicity Than Therapy?
Dr John Marshall suggests that 12 cycles of chemotherapy in metastatic colorectal cancer exceeds what is needed for maximum tumor regression and often results in toxicity that is better avoided.
Medscape Oncology
'Silver Tsunami' of Cancer Survivors to Slam US'Silver Tsunami' of Cancer Survivors to Slam US
Cancer survivors will be great in number and advanced in age over the next 25 years, a new report indicates
Medscape Medical News
Counting Colorectal Tumors During Flights to AsiaCounting Colorectal Tumors During Flights to Asia
After much retrospection and many transpacific airline flights, Dr Venook shares with Dr Kerr his research on sidedness of CRC and its effect on management of four apparent disease subtypes.
Medscape Oncology
Cetuximab Continuation After CRC Progression May Up PFS Cetuximab Continuation After CRC Progression May Up PFS
Dr David Kerr reports on a phase 2 study suggesting that continuation of cetuximab after progression may improve progression-free survival in patients with metastatic colorectal cancer.
Medscape Oncology
Cabozantinib and Lenvatinib for Kidney Cancer Get OK in EU Cabozantinib and Lenvatinib for Kidney Cancer Get OK in EU
Both drugs are recommended for approval for second-line use in patients with kidney cancer who have already been treated with a VEGF inhibitor.
International Approvals
1 in 12 Chance of Second Cancer in Many Survivors1 in 12 Chance of Second Cancer in Many Survivors
Cancer survivors are always at risk for a second primary cancer. A new study provides details, including that bladder cancer survivors are at most risk.
Medscape Medical News
PSA Screening: Don't Throw the Baby Out With the BathwaterPSA Screening: Don't Throw the Baby Out With the Bathwater
Two groups of experts agree that PSA testing can reduce prostate cancer deaths, but what type of screening strategy will work best?
Medscape Medical News


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