Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Per an early release of the Centers for Disease Control and Prevention (CDC) Morbidity and Mortality Weekly Report (MMWR), new information was released today regarding聽Eculizumab (Soliris庐) in patients with the rare blood disorders,聽paroxysmal nocturnal hemoglobinuria and atypical hemolytic uremic syndrome. Read the MMWR article in full here.
Note: The following is an abridged聽form of an article from the聽Centers for Disease Control and Prevention(CDC). The original full-length of the article聽can be read聽here. The Centers for Disease Control and Prevention (CDC), along with researchers from聽the聽Hemophilia Inhibitor Research Study (HIRS), have recently published two articles in The Journal of Thrombosis and Haemostasis. The articles describe […]
A recent article in Blood, a publication of the American Society of Hematology, examines thirteen years of surveillance data collected by the Centers for Disease Control and Prevention regarding patient outcomes for men with severe hemophilia. Among the key points: Prospectively collected data on demographics, complications, and mortality are described for 4899 US men with […]
For the past few months, HFA has been monitoring the progression of the Zika virus in the United States. Since the first reported cases of Zika virus reaching the United States in January, there have been thousands of additional cases. According to the Centers for Disease Control (CDC), the follow cases and causes of transmission […]
The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC, has been awarded year three of a five-year cooperative agreement from the Centers for Disease Control and Prevention (CDC).聽 The award allows HFA to continue its mission of assisting and advocating for individuals and families in the bleeding disorders community by further […]
By Michelle Morath 鈥淗ealthy Bodies Bleed Less鈥 continues to be the mantra of HFA鈥檚 FitFactor program. It is our goal to get every community member at least considering the positive effects that physical activity and a healthy diet can have not only on their joint health, but also their overall health and sense of well-being. […]
Note: The following is an edited form of a press release from the Centers for Disease Control and Prevention (CDC). The original form of the release can be read here. To read more about pain issues in the hemophilia community, please visit these resources from HFA: Opioids, Addiction, & Bleeding Disorders Pain Toolkit Webinar: Ouch! […]
Dear Addy, I’m taking my son in for his annual visit, and I saw that MASAC issued a statement about inhibitors. Should I have him checked for one? Signed, Learning All I Can Dear Learning, Inhibitors are antibodies that the immune system develops in response to a clotting factor product used to treat a person […]
Dear Addy, I keep seeing all of these Facebook posts and Tweets about the CHOICE Project. What is it and why does it matter if I take part? Signed, Need-to-Know Dear Need-to-Know, Glad you asked. CHOICE (Community Having Opportunity to Influence Care Equity) is a project driven by HFA and supported by the Centers for […]
School is out, so now what?聽 Summer is a great time to keep kids busy with physical activity because the weather allows for many聽outdoor activities.聽 The CDC recommends that kids get at least 60 minutes of physical activity every day.聽 Children with bleeding disorders need to exercise too.聽聽Physical activity helps聽to strengthen their muscles and keep […]
Note: The below email was sent by the Centers Disease Control and Prevention (CDC) on April 3, 2015: People with聽hemophilia聽lack a protein (a clotting factor) necessary for blood to clot normally. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. The best way to treat hemophilia is to replace the […]
Research has suggested that women who are carriers for hemophilia (see definition in box聽below) might have an increased tendency to bleed. Repeat bleeding into the joint can lead to persistent joint swelling, ultimately leading to limited joint movement, and reduced joint range of motion.聽Given that there is an under-appreciation of the effects of being a […]
On Thursday, January 22, 2015, the聽CDC聽hosted a webinar to help women with a bleeding disorder recognize the signs and symptoms of reproductive issues. The webinar was facilitated by聽Andra H. James, MD. Dr. James is Consulting Professor of Obstetrics and Gynecology at Duke University, where she also has an appointment in the Division of Hematology. Dr. […]
[glossary_exclude] This information was originally sent by the Division of Blood Disorders in the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) in an email on Wednesday, October 8, 2014.[/glossary_exclude] ____________________________________ Information about bleeding disorders is vital for young women. It can help them recognize […]
Last week the CDC reported that 9 in 10 kids, 2 to 18 years old, don鈥檛 eat enough vegetables. And, many of the veggies they do eat are fried, white potatoes. It is so important for growing bodies to get the essential nutrients they need and even more important in an individual with a bleeding […]
Blood Transfusion, a quarterly print and online publication of the Italian Society on Transfusion Medicine and Immunohaematology (SIMTI), released a special edition at the WFH World Congress in Melbourne entitled 鈥淗aemophilia Centre Accreditation Systems and Networks of Centres of Expertise for Rare Diseases in Europe and North America鈥. 聽This report supplement reviews current efforts in […]
The journal Haemophilia has published the results of a six-year study called the Hemophilia Inhibitor Research Study (HIRS) that was designed to test the feasibility of conducting national monitoring for inhibitors among people with hemophilia in the United States. The study collected blood specimens on a regular basis from study participants, which were tested at […]
From 2005-2009, federally funded Hemophilia Treatment Centers (HTCs) participated in the CDC’s聽Universal Data Collection (UDC)聽to help collect vital health information from about 27,000 patients in the bleeding disorders community. Report Highlights from the UDC Report This surveillance report focuses on UDC data collected during years 2005 through 2009. A total of 44,239 visits were made […]
On Thursday, April 3, 2014 the Centers for Disease (CDC) control hosted an informative and important webinar about new challenges facing the hemophilia community. If you missed it, take a look at Dr. Guy Young, Director of the Hemostasis and Thrombosis Center at Children’s Hospital Los Angeles, presentation slides聽about about the impact of: overweight and […]
In January 1983, the Centers for Disease Control gathered doctors, scientists, and representatives from the pharmacological industry and the bleeding disorders community in an attempt to find the means for halting the spread of AIDS. They were unable to arrive at a conclusion. During this meeting, Dr. Donald Francis of the CDC stood up, pounded […]
It is important that children with hemophilia make thoughtful decisions when choosing a sport that is right for them.聽 The CDC and the National Center on Birth Defects and Development Disabilities (NCBDDD) produced a short video聽that speaks to this message. In “Playing it Safe With Hemophilia,”friends with hemophilia talk about playing sports growing up and […]
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