Empowering Change: Raising Awareness for Bleeding Disorders in Women, Girls, and People with the Potential to Menstruate

The Western and Eastern Pennsylvania Bleeding Disorders Foundations are truly grateful to the Hemophilia Alliance Foundation for their generous Innovation Grant. With this support, we have been able to launch an important initiative focused on addressing the needs of women, girls, and people with the potential to menstruate who are affected by bleeding disorders.

On average, it takes 16 years from the onset of symptoms for a woman to receive a diagnosis of a bleeding disorder—a delay that is simply unacceptable. This prolonged journey often leaves individuals unaware that their symptoms are part of a larger, treatable condition. With this joint effort between the Eastern and Western Pennsylvania Bleeding Disorders Foundations, we aim to shorten that delay, improve diagnoses, and enhance the quality of life for those affected.

A key element of our initiative has been the distribution of over 3,000 period packs across Pennsylvania. These packs, which have been provided to school nurses, rural health clinics, and university health centers, are designed to support individuals experiencing heavy menstrual bleeding—a common symptom of bleeding disorders. Inside each pack, we’ve included a variety of pads and tampons, feminine wipes, stain remover wipes, disposable underwear, and a single-use menstrual disc with instructions. We’ve also included a card with information about bleeding disorder symptoms, a link to BetterYouKnow.org for an online risk assessment, and practical tips for managing heavy periods.

In addition, we’ve rolled out a magnet and mirror cling campaign, distributing over 2,000 of these materials across 44 colleges and universities in Pennsylvania. These magnets and clings, which highlight common symptoms of bleeding disorders in women, are strategically placed in women’s dorms and bathrooms, ensuring easy access to vital information. Each item includes a QR code that directs individuals to an online risk assessment, providing a simple and accessible way for women to learn more about bleeding disorders.

Over the past year, we’ve also participated in 25 outreach events—health fairs, nurses’ conferences, and community gatherings—where we’ve had the opportunity to engage directly with individuals, raise awareness, and provide valuable resources. A key part of our work is addressing period poverty, and in partnership with Hemophilia Treatment Centers across Pennsylvania, we’ve created a simple online application for individuals to request a $100 gift card for period products. Applicants can apply up to four times a year, ensuring they have access to the products they need.

We’ve also developed a toolkit to help community members get involved in this work. The toolkit includes symptom cards, magnets, mirror clings, and outreach scripts—resources that can be used to raise awareness and share information. These toolkits have been shared with bleeding disorder chapters and organizations across the country and around the world, helping others replicate our efforts and reach even more people.

We’re already seeing the impact of these efforts: at least seven students have been evaluated for a bleeding disorder, and one has received a formal diagnosis. This is just the beginning, and we are excited to continue raising awareness, providing support, and making a difference in the lives of those affected by bleeding disorders.

We are incredibly thankful to the Hemophilia Alliance Foundation for making this initiative possible. Together, we’re creating positive change and supporting women, girls, and people with the potential to menstruate with bleeding disorders in ways that will have a lasting impact.