Five Years of Progress: Reflecting on Hereditary Factor X Deficiency (HFXD) Awareness Day

Today, October 10th, also known as 10x10, marks the fifth annual Hereditary Factor X Deficiency (HFXD) Awareness Day. As I reflect on the journey since the first HFXD Awareness Day in 2019, I am proud of the progress we have made in raising awareness for this rare condition. The growth in the rare and ultra-rare disease space has been remarkable, and our strides have empowered more patients and caregivers to seek diagnosis and treatment.

Hereditary Factor X Deficiency is an extremely rare bleeding disorder, affecting approximately one in a million people. Although rare, HFXD can lead to severe and life-threatening complications, such as bleeding in the brain or stomach, if left undiagnosed and untreated. Raising awareness of this condition is essential to ensuring that patients get diagnosed early, which can make a significant difference in their quality of life.

The symptoms of HFXD, such as frequent bruising, nosebleeds, and unexplained bumps, may seem like childhood rites of passage, but in rare cases, they can be warning signs of undiagnosed HFXD. By increasing awareness of HFXD, we can help healthcare providers (HCPs) recognize these signs, leading to earlier diagnosis and treatment.

Over the years, I have witnessed a growing sense of community within the bleeding disorders space. Attendance at conferences and forums focused on bleeding disorders has steadily increased, with more patients, caregivers, and healthcare professionals participating. This increase is not just about numbers—it represents the lives of those affected who are now better informed, diagnosed earlier, able to seek appropriate treatments and in turn aiding in spreading awareness.

The growth in the number of patients and caregivers attending bleeding disorder conferences highlights the real and growing need for awareness. Despite the small population affected by rare disorders like HFXD, the impact is profound. Every step we take toward spreading awareness can potentially save a life by encouraging someone to get diagnosed early.

This year’s HFXD Awareness Day falls during International Plasma Awareness Week (IPAW), a fitting convergence, as the primary treatment for HFXD involves plasma-derived therapies. These therapies replace the missing protein in the blood that is essential for clotting. Plasma-derived therapies are not only crucial for treating HFXD but are also vital for many other rare and chronic diseases as well as acute care situations. The importance of plasma donations cannot be overstated, as these therapies rely on the generosity of plasma donors to save lives around the world.

Early diagnosis and treatment are critical for managing the challenges faced by those living with HFXD. Plasma-derived therapies, in particular, play a central role in improving the lives of patients, making it essential to ensure their availability for those in need. The collaboration between industry leaders and healthcare providers to bring these therapies to market has been key to addressing both rare and ultra-rare disorders.

I have seen a noticeable shift in the industry landscape over the past five years. More physicians are presenting on HFXD and seeking information on diagnosis and treatment. The collaboration between healthcare providers, researchers, and companies dedicated to producing plasma-derived therapies has strengthened, creating a more robust support network for rare disease patients.

On this fifth annual HFXD Awareness Day, I'm encouraged with how far we have come. From growing awareness to increased access to treatment, the landscape has evolved significantly since we first started this journey. I am proud to be part of an industry that is committed to making a difference in the lives of patients and their families.

While we have made great progress, there is still much work to be done. As we move forward, our goal remains to educate as many people as possible about HFXD and other rare disorders. Awareness leads to early diagnosis, and early diagnosis leads to better treatment outcomes. Together, we can continue to raise awareness, support the rare disease community, and ensure that more lives are saved through early detection and treatment.

I encourage you to learn more about HFXD and its impact, whether you’re a pharmacist, health care provider, or in another industry all together…..lets keep the momentum going to make a difference and infuse hope in those living with rare diseases like HFXD.?

As I bring my thoughts and reflections to a close let's all remember….10x10 is a special day…. it's one day… and I hope that this one-day lights a spark in many people in the US and around the world to make a difference. Thanks for reading and thanks for caring!

?

Learn more about Hereditary Factor X Deficiency

https://www.hemophilia.org/bleeding-disorders-a-z/types/other-factor-deficiencies/factor-x

https://www.kedrion.us/