Patient Stories

Real VONVENDI® patients share their Deciding Factors

Our patient ambassadors share a bleeding disorder, but they each have a unique Deciding Factor that inspired them to talk to their healthcare provider about finding a treatment that's right for them.

What could your Deciding Factor be?

Clinical trial information

VONVENDI was tested in a clinical trial for on-demand treatment, and a clinical trial for surgeries and procedures.

On-demand study

VONVENDI, given with and without additional recombinant FVIII (rFVIII), was studied in 22 adult patients with different types of severe von Willebrand disease (VWD) to test how it would work to control a total of 192 bleeds. The first dose of VONVENDI was given with rFVIII; if further doses were necessary, rFVIII was given only when needed.a Investigators rated bleed resolution according to a scale of "Excellent=1," "Good=2," "Moderate=3," or "None=4." Treatment success was defined as a mean efficacy rating score of less than 2.5 for all bleeding episodes.1,2

More study details

Surgical study

VONVENDI was studied in 15 adults with all types of severe von Willebrand disease to test how it would work to prevent excessive bleeding during and after surgery. VONVENDI was first given 12-24 hours before surgery to give time for each person's natural factor VIII (FVIII) to rise. VONVENDI was given again within 1 hour before surgery, either with or without rFVIII, based on level of FVIII. For up to 72 hours after surgery, VONVENDI was dosed with or without rFVIII every 12-48 hours as needed to prevent excessive bleeding. Study investigators rated bleeding control as "Excellent," "Good," "Moderate," or "None," with success defined as "Excellent" or "Good."1,3

More study details

aYour doctor will decide if you may use VONVENDI by itself, or if you also require rFVIII along with VONVENDI, based on your clinical situation.1

Loving my outdoor lifestyle

Leslie loves hiking, camping, fishing, and traveling around the country with her husband and their young son—all while attending nursing school. When Leslie saw that frequent bleeding episodes were keeping her away from her favorite outdoor activities, she decided to talk to her healthcare provider. Together, they decided VONVENDI was the right treatment to manage Leslie's bleeding episodes.

Now, Leslie knows that when bleeding episodes occur, she has a treatment that works for her.

Real VWD patient Leslie resting on a rock with her outdoor outfit on shares about her experience with VONVENDI®.

"A nurse recommended that I try VONVENDI for an upcoming sinus surgery. I experienced minimal bleeding and was amazed at how well this treatment worked for me."

Making my voice heard

Nicole works as a medical scribe, cares for her younger sister, and maintains an active social media presence in support of the VWD community all while supporting her own family. Nicole has endured a long and difficult road to her diagnosis of severe type 1 VWD. In fact, she was not diagnosed with VWD until she was 16 years old. Today, Nicole feels fortunate to have found a hemophilia treatment center that helps her feel seen, heard, and important.

What makes Nicole feel valued? To know that she is an essential member of her own healthcare team. Nicole is involved in her own treatment decisions and care.

Real VWD patient Nicole walking on a sidewalk holding her purse.

"VWD is not an easy diagnosis. The amount of support I received from those fighting the same battle gave me strength. My experience has taught me to advocate for myself and others."

Making time for what matters most

Erica raises and homeschools her three children, teaches English classes online, and cares for her mother—all while maintaining a beautiful home and enjoying an active social life. For years, she has had to stand up for herself to ensure a correct diagnosis and to receive appropriate treatment for her von Willebrand disease.

Her advice to others living with VWD? Read and research on your own about VWD, speak with others within the community, and seek out healthcare providers who have experience treating VWD.

Real VWD patient Erica talking at the table about how VONVENDI® allowed her to make time for what matters the most.

"In addition to treating and controlling bleeds on-demand, I have also infused VONVENDI before and after dental surgery, and experienced minimal bleeding. I was convinced."

Real VWD patient Erica sitting around the table with her family and friends. VONVENDI® container and glass bottles.

Is VONVENDI® [von Willebrand factor (Recombinant)] right for you?

VONVENDI was created specifically to treat bleeding episodes in adults with VWD. When infused into your blood stream, it acts like your body's natural von Willebrand factor (VWF), helping to form clots, and helping your own FVIII to work.5111

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Real VWD patient Nicole smiling at the camera.
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More facts about VWD

Get to know the most common inherited bleeding disorder.641

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References

  1. VONVENDI Prescribing Information
  2. Gill JC, Giancarlo C, Windyga J, et al. Hemostatic efficacy, safety, and pharmacokinetics of a recombinant von Willebrand factor in severe von Willebrand disease. Blood. 2015;126(17):2038-2045.
  3. Peyvandi F, Mamaev A, Wang JD, et al. Phase 3 study of recombinant von Willebrand factor in patients with severe von Willebrand disease who are undergoing elective surgery. J Thromb Haemost. 2019;17(1):52-62.
  4. What is von Willebrand disease? Centers for Disease Control and Prevention website. Accessed July 9, 2020. http://www.cdc.gov/ncbddd/vwd/facts.html
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