Receive Our Newsletter

martha_2016-09-21

Infusing Love: Aprendiendo a vivir con un nuevo diagnóstic

von Willebrand Disease… ¿Qué es eso? ¿Qué clase de enfermedad tienen mis hijas? ¿Es contagioso? ¿Qué le puede pasar? Esta y muchísimas preguntas más fueron las que nos hicimos el día en que la pediatra en Albany, Nueva York, diagnosticó nuestra hija menor, Juliemar, 8 años a este momento, con von Willebrand Disease (vWd), tipo […]

anxious_dear_addy-jpg

Dear Addy: Advocacy Presentation

Dear Addy, I have to do a presentation in front of my eighth grade class on a cause I care about. I’d like to focus on bleeding disorders because I have von Willebrand Disease (vWD), but there’s so much information and I don’t know where to start. Help! Signed, Anxious for an A   Dear […]

Infusing Love: No (Wo)Man’s Land

My 10-year-old daughter, Natalie, has been officially DNA tested and is a carrier of the hemophilia gene. This wasn’t particularly surprising or upsetting to my husband or myself, or even Natalie. For a child, she has a remarkably good grasp on the genetics of hemophilia and she understands what it means to be a carrier. […]

Industry News

PPTA Releases Updated Statement on Zika

The following is a summary of a statement released by the Plasma Protein Therapeutics Association (PPTA). To read the PPTA statement in full, click HERE. On September 8, 2016, PPTA issued an updated news release regarding the Zika virus (ZIKV) and plasma protein therapies. In the release, PPTA notes that: ZIKV is in a family of (lipid-enveloped) viruses that is […]

Industry News

Sangamo BioSciences Receives Orphan Drug Designation From The FDA For SB-FIX

The following is excerpted from a press release from PRNewswire. Read the press release in it’s entirety here. Sangamo BioSciences, Inc. announced earlier this week that the U.S. Food and Drug Administration (FDA) has granted orphan drug designation to SB-FIX, the company’s zinc finger nuclease (ZFN)-mediated genome editing product candidate for the treatment of hemophilia B. Sangamo […]

ben_try_it_blog.jpg

Infusing Love: A Mom Intervention

Benny starts high school this week. How did that happen? When I started working at HFA he was in kindergarten. I remember being amazed at his astounding ability to put 100 piece puzzles together at 5 years old and spend hours building things with Legos. At the start of second grade, despite untold hours trying, […]

taking_control_dear_addy.jpg

Dear Addy: Mental Health

Dear Addy, I’m concerned about how my bleeding disorder is effecting my mental health. However, it’s not clear that my insurance covers a therapist or counselor so I keep putting off seeking counseling or therapy. How important is mental health and where do I find the correct insurance information? Sincerely, Taking Control _________________________________________________________________________ Dear Control, […]

FitFactor: Six Steps to Sleeping Well

When it comes to health and lifestyles, many of us do not put sleep at the top of our priority list. We may not realize the numerous benefits that sleep has on our bodies and minds. Not only does it give us the rest we need to replace the energy expended from the day but […]

Blog_Kari_Shield

Infusing Love: Thank You to Our Teachers

Through out the school year I have such a hard time balancing being the mom that every teacher or administrator loves to communicate with verses being the mom that everyone wants to run away from. I decided to sit down and write exactly what I wish I could say to every teacher or administrator Scarlett […]

medical_news_600x600

Update #3: Zika Virus & Blood Supply

On August 26th, the US Food and Drug Administration issued a revised guidance to US blood banks addressing Recommendations for Reducing the Risk of Zika Virus Transmission by Blood and Blood Components. The Zika virus is transmitted primarily by the Aedes mosquito; it can also be spread by sexual contact. Although 4 out of 5 […]

Page 1 of 12812345678910NextLast »

Assisting and Advocating for the Bleeding Disorders Community