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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

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Channel: BloodMed.com News
vCJD test could enable blood supply screening
A new blood test has been found to detect variant Creutzfeldt-Jakob disease with high accuracy, an international research team has reported.
Fanconi anaemia linked to major cancer gene
A molecular link between a rare childhood genetic disease and a major cancer gene has been found that could result in improved treatment for some patients, according to US researchers.
Genomic analysis of AML subtype is revealed
The first comprehensive genomic analysis of a rare subtytpe of acute myeloid leukemia has been unveiled at the annual meeting of the American Society of Hematology in San Diego, USA.
Fasting may limit leukaemia
Intermittent fasting could be effective at stalling the progress of B-cell and T-cell acute lymphoblastic leukaemia in children, researchers have found.
Hope for pre-eclampsia therapy
Treating white blood cells with hormones may prove an effective therapy for pre-eclampsia, according to laboratory research unveiled by British researchers.
Dormant cells may explain leukaemia relapse
German researchers say they have found a rare population of dormant leukaemia cells, which may help explain disease relapse.
UK study to trial emergency blood products
A major British study is to test the benefits of giving blood products to seriously injured patients before they are taken to hospital, it has been announced.
Diabetes link to lymphoma-related heart failure
Patients with diabetes treated for cancer may face an increased risk of developing heart failure, a European conference has heard.
Ribosome role in multiple myeloma
Ribosome defects might play a key role in the development of multiple myeloma in a significant proportion of patients with the disease, according to Belgian scientists.
TKI reduction is 'safe' for some leukemia patients, studies show
Some chronic myelogenous leukemia (CML) patients can safely reduce their intake of a treatment drug to lessen the side effects, British researchers have told a major conference.
Channel: NBC News Health
Heller Becomes the Fifth GOP Senator to Oppose Health Care Bill
Mitch McConnell intends to put his health care bill up for a full Senate vote next week but now five Republicans have come out against it in the current form.
Building Molds Send Toxins Right Into Air
Sick Building Syndrome: Fungi Can Squirt Toxins Directly Into Air, Study Finds
Why Medical Groups Hate the GOP Health Care Plans
Mainstream medical groups, from oncologists to pediatricians, are united in their opposition to the Republican health care plan.
Dietitian-Approved Frozen Treats Under 200 Calories
Because eyeballing a -cup scoop in a pint of ice cream is a serious exercise in willpower.
These Three Things May Be Best Hope for Delaying Memory Loss
Few things are really proven to delay memory loss. Here are the best bets.
The Surprising Perks of Being an Older Parent
A new study says older dads raise 'geekier' kids, plus five other perks of being an older parent.
Key Senate Conservatives Won't Support GOP Health Care Bill Yet
Four key Republican senators announced they will not vote for the GOP health care bill unless changes are made, putting passage of the bill at risk.
What Happens to People on Obamacare if a New Health Care Bill Passes?
Lawmakers are debating the future of health care.
Women Skipping Doctor Visits To Lose Weight First
Nearly half of U.S. women don't realize heart disease is their top health risk, and many admit to skipping clinic visits because they want to lose weight first.
Senate Health Care Bill Includes Deep Medicaid Cuts
Senate Republicans unveil a draft of health care legislation that will include big reductions to Medicaid, tax cuts and elimination of the insurance mandate.
Channel: Medscape Hematology-Oncology Headlines
FDA Approves Targeted Drug Combo for Lung CancerFDA Approves Targeted Drug Combo for Lung Cancer
For the first time, the FDA has approved treatment for metastatic non-small cell lung cancer with BRAF V600E mutation.
FDA Approvals
FDA Clears Haegarda to Prevent Hereditary Angiodema AttacksFDA Clears Haegarda to Prevent Hereditary Angiodema Attacks
Haegarda is the first C1 esterase inhibitor (human) for at-home subcutaneous administration for the prevention of hereditary angioedema attacks in adolescents and adults.
FDA Approvals
Immunotherapy: New Era for NSCLC Management Immunotherapy: New Era for NSCLC Management
Immunotherapy for advanced NSCLC has altered clinical care, shaken up how guidelines are developed, and changed how trials are conducted.
Medscape Oncology
Post-Breast Cancer Guidelines: Are Providers Listening?Post-Breast Cancer Guidelines: Are Providers Listening?
A recent study found that post-cancer guidelines fall short, but experts argue that those for breast cancer should be clear.
Medscape Oncology
Should Cancer Patients Have the Right to Try? Should Cancer Patients Have the Right to Try?
Do patients with terminal cancer have the right to try investigational medicines not yet approved by the FDA? Where do you stand on Right-to-Try legislation?
Medscape Oncology
Aspirin After CRC Diagnosis Ups Survival in Select Patients Aspirin After CRC Diagnosis Ups Survival in Select Patients
Timing and tumor subtype influence benefit of aspirin and other NSAIDs in colorectal cancer survivors, new research suggests.
Medscape Medical News
Neoadjuvant Pembrolizumab Promising in Head and Neck CancerNeoadjuvant Pembrolizumab Promising in Head and Neck Cancer
The data are early and the cohort small, but use in the neoadjuvant and adjuvant setting showed antitumor activity.
Medscape Medical News
Texas Oncologist Runs for US CongressTexas Oncologist Runs for US Congress
Frustrated and fearful about the future of healthcare in the United States, a medical oncologist and researcher from MD Anderson has decided to enter politics
Medscape Medical News
Most Precise Estimates Ever of Cancer Risks With BRCAMost Precise Estimates Ever of Cancer Risks With BRCA
The first really large prospective study has provided more detail on breast and ovarian cancer risks in women harboring BRCA1 and BRCA2 mutations.
Medscape Medical News
Gait and Chemo-Induced Neuropathy: The Long and Short of ItGait and Chemo-Induced Neuropathy: The Long and Short of It
Neurotoxic chemotherapy is increasingly being linked to deterioration in gait and balance caused by chemotherapy-induced peripheral neuropathy, both in the short and long term.
Medscape Medical News

 

 
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