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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
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.
Drug may allow transplant in leukemia
A trial of the drug inotuzumab ozogamicin suggests it may help some acute lymphoblastic leukemia patients become suitable for stem cell transplant.
Lymphoma patients with HIV should receive stem cell transplant
Autologous stem cell transplant should be standard care for people with HIV-associated lymphoma, according to new research.
Cell conversion makes new blood cells
Scientists have discovered a set of genetic 'keys' that can reprogram skin cells to create red blood cells.
CML treatment hope from precision medicine
British researchers have unveiled a potential new treatment for chronic myeloid leukemia.
Selinexor combination trial results announced
A US-based phase 1 trial that combined a new cancer drug with two other therapies has shown promising results among patients with relapsed and refractory multiple myeloma.
Call to increase blood donation
Much of the world needs to increase the rate of voluntary unpaid blood donation, according to a new analysis.
Protein linked to aggressive myeloma
The proliferation of a protein has been linked to extramedullary disease, an aggressive multiple myeloma.
POLLUX trial success for myeloma care
A trial into a new immunotherapy treatment for patients with multiple myeloma has ended early after "significant success".
AML is 11 diseases - study
Acute myeloid leukemia is at least 11 different diseases, according to a major new study.
Channel: NBC News Health
New Zika Studies Reveal Invisible Damage to Babies
Brazilian researchers found as many as one in five babies born with brain damage caused by Zika had normal-sized heads.
Stem Cell Clinics Pop Up Across the U.S.
Two experts found more than 570 clinics offering "stem cell" treatments, many with little or no proof they work or are even legal.
Cancer 'Moonshot' Plan: Sharing Knowledge Can Speed Cures
A few carrots, a few sticks, supercomputers, and a faster approval process for new drugs all got floated at the national pep rally for the moonshot.
Cute Name, Dangerous Drug: What to Know About Molly
As summer outdoor music festival season heats up, so does the risk of overdoses of party drugs like "Molly."
A Little Butter Won't Kill You, Study Finds
A little butter isn't going to kill anyone, but it's not a health food, either, nutrition experts found in a big study released Wednesday.
Prove Hand Sanitizers Work, FDA Tells Makers
Companies that make hand sanitizers must show that they are safe and work as well as people think they do.
5,000+ American Water Systems Violate Lead Rules
While Flint, Michigan's case is dominating headlines, cities and towns across the U.S. are in similar danger.
New Studies Show Just How Tricky the Zika Virus Is
A batch of new studies show the Zika virus is trickier than it appeared at first glance, lurking for months longer than it should in pregnant females.
Congressmen Fight to End FDA Restrictions on Gay Blood Donors
Rep. Alan Grayson, D-Fla., plans to introduce a bill that could help combat an FDA policy that recommends restricting blood donations from men who have sex with men.
Senate Democrats Block GOP's Zika Funding Bill
Democrats say the Republican bill was filled with poison pills.
Channel: Medscape Hematology-Oncology Headlines
Hearing Tests Needed in Cisplatin-Treated Patients With CancerHearing Tests Needed in Cisplatin-Treated Patients With Cancer
The finding of hearing loss in many testicular cancer survivors is also likely applicable to patients with other types of cancer who have received treatment with cisplatin.
Medscape Medical News
Cancer Moonshot Effort Unveils Dozens of Initiatives Cancer Moonshot Effort Unveils Dozens of Initiatives
Federal officials outlined plans to collaborate more with the private sector in an acknowledgment that government funding would not be enough.
Medscape Medical News
Midostaurin Works in Advanced Systemic MastocytosisMidostaurin Works in Advanced Systemic Mastocytosis
Desperately needed treatment for advanced systemic mastocytosis seems to have been found in the investigational multikinase inhibitor, midostaurin.
Medscape Medical News
#ASCO16: Hot Topics on Twitter#ASCO16: Hot Topics on Twitter
Social media activity using #ASCO16 at the ASCO annual meeting achieved record-breaking highs in many categories.
Medscape Oncology
Which Patient Is a Candidate for Immunotherapy?Which Patient Is a Candidate for Immunotherapy?
Because immunotherapies are approved for multiple cancers, Drs Weber and Postow discuss choosing the right patient for immunotherapy, taking into account comorbidities and potential adverse events.
Medscape Oncology
Checkpoint Inhibitors Linked to Inflammatory ArthritisCheckpoint Inhibitors Linked to Inflammatory Arthritis
Inflammatory arthritis and sicca syndrome have been reported with ipilimumab and/or nivolumab, and the conditions can persist after stopping therapy.
Medscape Medical News
Value Frameworks in Cancer Care: A Beginning, Not the Solution Value Frameworks in Cancer Care: A Beginning, Not the Solution
Defining the value of a drug in relation to its cost and benefit is an emerging theme in cancer care but remains untested.
Medscape Medical News
Life Span of CML Patients Approaches Usual LimitsLife Span of CML Patients Approaches Usual Limits
The life expectancy of recently diagnosed CML patients is now approaching that of the general population, at least in Sweden, according to new data from a national study.
Medscape Medical News
Oncology and Politics: How Long Will the Honeymoon Last? Oncology and Politics: How Long Will the Honeymoon Last?
A commentary on Joe Biden's Moonshot address at ASCO and what it will really take to make the initiative successful.
Ruesch Center
Immunotherapy 'Plus': Adding Radiation and Chemo to Immune TherapiesImmunotherapy 'Plus': Adding Radiation and Chemo to Immune Therapies
As data on single-agent immunotherapies mature, oncologists are beginning to turn their attention to combination approaches.
Medscape Oncology


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