Keeping Your Information Safe
in Advocacy
Dear WPBDF Community,
Your privacy and peace of mind are very important to us. We want you to always feel safe, respected, and supported when you
Category: Advocacy
Protect Patients from Non-Medical Switching
in Advocacy
As an Advocacy Ambassador, we are calling on you to take action and encourage your Pennsylvania House Representative members to co-sponsor vital bipartisan legislation that
Community Highlight: Anna B.
in Advocacy
Up until Anna was 19 years old, she never noticed any abnormal bleeding symptoms. In 2014, she underwent oral surgery, which to her wasn’t a
What Living With von Willebrand Disease Has Taught Me About Profits Taking Priority Over Patient Lives
Maria Shoemaker
Any person living with a chronic illness knows that we often must become our own advocates in the fight for our health and for
When Copay Assistance Backfires on Patients
in Advocacy
Julie Appleby, KFF Health News
March 15, 2024
In early 2019, Jennifer Hepworth and her husband were stunned by a large bill they unexpectedly received for
Vote for your favorite 2024 World Hemophilia Canvas!
To celebrate Bleeding Disorders Awareness Month and World Hemophilia Day, members of the WPBDF community were sent 4 x 4 canvases and were asked to
“I wish more OB/GYNs would be more educated about bleeding disorders. My gynecologist told me to get a hysterectomy, not knowing I had a bleeding disorder. If he had known about my VWD, I wouldn’t have had to make that choice and get that procedure.”
Constance is diagnosed with von Willebrand Disease (VWD), and like many other women in the bleeding disorders community, did not receive her diagnosis until much
“We have struggled to be heard, but now is the time to speak up because they are starting to listen! The struggles were worth it, especially if I can advocate and prevent someone from going through all the pain and struggles that I have had to go through.”
At two years old, Cassie accidentally received her diagnosis of Type 1 von Willebrand Disease, severe, when she was scheduled for surgery. Before the procedure,
“We do have symptoms, we are not going to be satisfied with, ‘Oh that’s your normal,’ anymore!”
Before Jessamyn received her bleeding disorder diagnosis, she had terrible, long, and miserable periods. Her family had a long history of bleeding issues, but once
“I finally learned that I was not a problem, and that women do have hemophilia.”
Marisa has mild hemophilia A, but she didn’t receive her diagnosis until she was 31 years old. Growing up as a teenager, and throughout her