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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
Older transfused blood is safe
Transfusions with older red blood cells may be equally as beneficial for critically ill adults as transfusions with fresh blood, a new study has found.
New drug hope for Hodgkin lymphoma
A new drug for treating Hodgkin lymphoma has doubled the time that patients survive without the disease progressing, a phase 3 trial has found.
Popular antibiotic could target cancer
A common antibiotic could be part of treatment for cancer, it has been claimed.
On behalf of the Organising Committee, we invite you to join us at iwCLL 2015 - Venue: Hilton Hotel, Sydney Australia Dates: 6 - 9 September 2015
Emerging novel data from B-cell receptor inhibitor and apoptosis induction agents, maintenance therapy trials, trials in the elderly, and the ongoing molecular revolution that will change the course of CLL biology and therapy globally. The event is a must for anyone with an interest in CLL.
US introduces hematology change
New career paths for hematologists are being carved in the US health sector because of the changes to the way the subject is being taught.
Breakthrough offers 'bubble baby' hope
Youngsters suffering from the rare "bubble baby" disease could have access to a new treatment after US scientists found a way that could help sufferers generate an immune system.
Heart patients need blood - study
Trying to save blood by not giving heart surgery patients transfusions may be dangerous, according to a new study.
Possible therapy for iron overload
Researchers say they are closing in on a new treatment for the iron overload disease hemochromatosis.
How O blood stops malaria
Blood group O gives protection against malaria because it resists a glue-like protein involved in the disease, Swedish researchers have reported.
New test for effectiveness of anti-cancer drugs
A new method that enables doctors to monitor the effect of anti-cancer drugs on very rare leukemia stem cells has been developed by a team of scientists in Manchester, England.
Channel: NBC News Health
Liberia Urges Ebola Survivors to Stop Having Sex
The death of an Ebola-stricken woman in Liberia has prompted officials to urge survivors to abstain from sex temporarily.

Is It OK to Eat Moldy Food?
You're famished for a bit of cheese, but you notice a blue spot on the chunk of cheddar in your fridge. Is it OK to slice off the bad part and eat the rest?

Oklahoma Gets Its First Measles Case in 18 Years
The Oklahoma Health Department confirmed its first case of measles in 18 years and the infected person is an international traveler.

Immune Therapy Offers Rare Hope for Ovarian Cancer
Researchers report on two possible new ways to help ovarian cancer patients live longer.

Immune Therapy Offers Rare Hope for Ovarian Cancer
Researchers report on two possible new ways to help ovarian cancer patients live longer.

Google, J&J Team Up to Build Robot Surgeons
Google is teaming up with Johnson & Johnson to build robots that can help surgeons in the operating room

Could Better Screening Catch Suicidal Pilots?
Pilots rarely use their aircraft to commit suicide and even more rarely kill others along with themselves, experts say.

White House Releases Plan to Fight Superbugs
The White House released a five-year, $1.2 billion plan on Friday to fight drug-resistant "superbugs".

Oklahoma Reports First Measles Case in 18 Years
Oklahoma has its first confirmed measles case since 1997, state health officials reported Friday.
Want to Live to Be 105? Check Your Genes
Researchers find that more than 280 genes are involved in getting people to extreme old age ? 105 and older.

Channel: Medscape Hematology-Oncology Headlines
EU Recommends Approval of Gardasil 9 VaccineEU Recommends Approval of Gardasil 9 Vaccine
The new Gardasil 9 vaccine, which offers protection against nine types of human papillomavirus, has been recommended for approval in Europe.
News Alerts
NEPA Combo for CINV Nears Approval in EuropeNEPA Combo for CINV Nears Approval in Europe
In Europe, approval has been recommended for combination netupitant and palonosetron to prevent chemotherapy-induced nausea and vomiting (CINV) in cancer patients.
News Alerts
EMA Fast Tracks Lenvatinib for Refractory Thyroid CancerEMA Fast Tracks Lenvatinib for Refractory Thyroid Cancer
The European Medicines Agency has recommended marketing authorization for lenvatinib for patients who no longer respond to standard therapy.
Medscape Medical News
Experts Support Jolie's Prophylactic Surgery DecisionExperts Support Jolie's Prophylactic Surgery Decision
Although removal of ovaries and fallopian tubes, with consequent forced menopause, seems a drastic choice, experts say it is appropriate.
Medscape Medical News
They're ALL Good: Unrelated Donors vs SiblingsThey're ALL Good: Unrelated Donors vs Siblings
It's poetic and evidence-based: among donors for stem cell transplantation for youngsters with acute lymphocytic leukemia, we are all like brothers and sisters.
Medscape Medical News
Documentary Captures 'Heroics' of Oncologists, PatientsDocumentary Captures 'Heroics' of Oncologists, Patients
'The Emperor of All Maladies' documentary will raise awareness of what cancer is all about and will make people better appreciate cancer specialists.
Medscape Medical News
Fitness Levels Linked to Risk for Some Cancers and DeathFitness Levels Linked to Risk for Some Cancers and Death
Fitter men had a lower risk for lung and colorectal cancer, but not prostate cancer, and a lower risk for death from cancer or cardiovascular disease.
Medscape Medical News
Budesonide Has Potential for Lung Cancer ChemopreventionBudesonide Has Potential for Lung Cancer Chemoprevention
Inhaled budesonide significantly decreased the size of nonsolid lung nodules, which is of potential importance because some can progress to adenocarcinoma.
Medscape Medical News
Pediatric ALL: Measuring MRD Twice During Induction Will DoPediatric ALL: Measuring MRD Twice During Induction Will Do
Measuring minimal residual disease at day 19 and day 46 of remission induction can guide treatment for most pediatric patients with ALL.
Medscape Medical News
Is Bevacizumab Truly a New Standard in Cervical Cancer?Is Bevacizumab Truly a New Standard in Cervical Cancer?
New data on quality of life show 'convincingly' that it is not adversely affected, but does it all add up to a new standard?
Medscape Medical News


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