Home     In Memorium     Disclaimer     Members Area
   

Welcome!

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.

Frequently
Asked
Questions

Glossary of
PNH Terms
 

PNH
Files
 

Website
Links
 

 
   

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
Platelet action uncovered
New findings about a key hormone are helping to explain how platelet production is controlled, researchers have reported.
Hope for new blood type test
A new DNA-based testing system can provide rapid and highly accurate details of donated blood, French researchers reported yesterday.
Organic food may protect against lymphoma
Eating organic food may feel healthy - but it does not cut the risk of developing cancer, according to the findings of a major study.
'Game changing' approach to leukemia testing
A new approach to leukemia testing has been described as "game changing" by the molecular pathologist who led the US study.
Limiting transfusions cuts infection
Giving hospital patients red blood cell transfusions only if their hemoglobin level is low can prevent infections, new research shows.
Questionnaire helps young adults with sickle cell
A tool has been developed to help doctors decide when young adults with sickle cell disease can move into adult care.
Blood cells unravelled
Scientists have unveiled new genetic findings about blood cells, aimed at understanding how they develop from stem cells.
Thalassemia pregnancy guidelines
The first guidelines for the care of pregnant women with the blood condition thalassemia have been published.
Gene gives telomere cancer clue
A study of hereditary skin cancer may have identified a major new gene linked to some forms of leukemia, researchers say.
New sickle cell guidelines
Pulmonary hypertension is a growing problem for patients with sickle cell disease as treatments improve survival, experts have warned.
Channel: NBC News Health
Uta's marathon training tip of the day: Avoid trying anything new
Uta Pippig is a marathon legend, the first woman to win three consecutive Boston marathons. As TODAY's Natalie Morales prepares to attempt her sixth marathon, and first run in Boston, on April 21, Pippig is sharing her daily training tips with TODAY.com.







Hospital Technician Admits Lying About Test Results







Deadly Diseases Rising for Cats and Dogs







'Why Me?' Vets Face Much Higher Risk of Lou Gehrig's Disease
A Vietnam veteran swoops his hand through a row of baby vegetables, caressing the peppers on down to the kale. The plants are aligned in tidy, military order atop his backyard fence. He could spend hours describing his first garden. But he cannot utter a word.He can?t even eat his eventual harvest.







Whoopi Goldberg Pens Marijuana Column Ahead of 4/20

The actress wrote that she uses her vape pen, affectionately nicknamed ?Sippy,? to help treat glaucoma-related pain








Uta's marathon training tip of the day: Don't attack the course, befriend it
Uta Pippig is a marathon legend, the first woman to win three consecutive Boston marathons. AsTODAY'sNatalie Moralesprepares to attempt her sixth marathon, and first run in Boston, on April 21, Pippig is sharing her daily training tips with TODAY.com.







'Elimination diet' can make you feel better, doctor says
"Elimination diets" are aimed not at helping people lose weight but at helping them feel better.Here's how it works: Cut out certain foods or food groups for a few weeks, then add them back in one by one to test the body's response.

Don't get sidelined! 8 ways to recover from workouts faster
Ever try running that extra mile, upping the ante in your weight-training routine or trying out a new aerobics class only to pay for it in sore muscles the next day?or two?







Whoopi Goldberg Touts 'Vape Pen' in Debut Pot Column

In a new column about marijuana, Whoopi Goldberg says she turned to pot to help excruciating headaches caused by glaucoma.








Side of Irony? Meal Sickens People at Food Safety Summit
Maryland health officials are investigating possible cases of food poisoning at what may be the worst-ever venue ? a gathering of government and industry leaders attending a national Food Safety Summit.







Channel: Medscape Hematology-Oncology Headlines
First Trial of Targeted MRI vs Standard Prostate BiopsyFirst Trial of Targeted MRI vs Standard Prostate Biopsy
The results, presented at the European Association of Urology Congress, have 'completely radicalized and changed our paradigm,' says researcher.
Medscape Medical News
ASCO Launches New Survivorship GuidelinesASCO Launches New Survivorship Guidelines
ASCO has launched the first 3 guidelines as part of a series that will cover all aspects of cancer survivorship.
Medscape Medical News
Swiss Medical Board: Stop Widespread Mammography ScreeningSwiss Medical Board: Stop Widespread Mammography Screening
An advisory body in Switzerland has proposed that the country end systematic breast cancer screening with mammography.
Medscape Medical News
Not Clear: Best Use of Rituximab in Follicular LymphomaNot Clear: Best Use of Rituximab in Follicular Lymphoma
Watching and waiting is the accepted practice for managing patients with asymptomatic, advanced-stage nonbulky follicular lymphoma. But another strategy is being championed.
Medscape Medical News
Chemotherapy 'Vastly Underutilized' in Bladder CancerChemotherapy 'Vastly Underutilized' in Bladder Cancer
Neoadjuvant use hovers at 4%, whereas adjuvant chemotherapy is increasing in popularity, according to data from the Ontario Cancer Registry.
Medscape Medical News
EU Warning: Herceptin Vials Have Been Tampered WithEU Warning: Herceptin Vials Have Been Tampered With
The European Medicines Agency is warning about a problem with a small number of batches of Herceptin (trastuzumab) for breast cancer.
News Alerts
Oncologist Compensation Increases Slightly, Middle of PackOncologist Compensation Increases Slightly, Middle of Pack
The annual Medscape Physician Compensation report is out once again. And it is a realistic, hype-free portrait of oncologist income.
Medscape Medical News
In Bladder Cancer, ERCC1 Status Predicts Chemo ResponseIn Bladder Cancer, ERCC1 Status Predicts Chemo Response
Survival is better if patients treated with neoadjuvant chemotherapy before radical cystectomy test positive for ECCR1, a protein involved in DNA repair, new research suggests.
Medscape Medical News
Fifty Years On, Half As Many Americans Now Smoke, but?Fifty Years On, Half As Many Americans Now Smoke, but?
Half as many Americans are smoking now as they were 50 years ago, but too many are still dying prematurely from preventable and avoidable smoking-related causes.
Medscape Medical News
FDA Approves Imaging Agent for Liver CancerFDA Approves Imaging Agent for Liver Cancer
The agent effectively replaces another that was in short supply.
FDA Approvals

 

 
Home     In Memorium     Disclaimer     Members Area

-: PNH Disease Support Group : Page Last Modified on Thursday, 13-Oct-2005 00:44:49 EDT :-
-: Site Hosted by VortexHost - http://www.vortexhost.com :-