Rare disease advocacy is a year-round endeavor for me

As the holidays draw near, it’s also time to shine a spotlight on education, awareness, and advocacy for pulmonary hypertension (PH).

PH has been a cause that’s close to my heart for nearly two decades. PH Awareness Month in November is a perfect opportunity to educate others about this condition. Yet, our mission must also persist beyond a single month of each year.

Sharing personal stories, like writing this column, is a powerful tool for spreading awareness. Our narratives as PH patients and caregivers connect us and foster empathy and understanding. I’ve shared my story in magazines and local newspapers and at conferences. This year, I was thrilled to contribute to “Kaleidoscope Rare Disease Stories: Told by the People who Live Them,” a compelling book by fellow Bionews columnist Kerry Wong published on Rare Disease Day earlier this year, on Feb. 29.

Each story in “Kaleidoscope” uncovers various facets of our experiences: the path to diagnosis, valuable lessons learned, personal growth, and connections made within the rare disease community. Sharing our adventures with PH and other rare conditions paints a vivid picture of living with these challenges and highlights their impact on our daily lives. This approach humanizes the information about PH and other diseases, making it more relatable and meaningful to others.

Beyond sharing personal stories, there are countless other ways to keep the fight for PH awareness alive year-round. One exciting avenue is participating in local and national events dedicated to rare disease advocacy, such as World PH Day on May 5. These events aren’t only about raising awareness, they’re also about connecting with others in the community and exchanging valuable insights.

Staying informed about the latest research and other developments is another crucial part of advocacy. By keeping up with scientific and medical advancements, we can spread accurate and timely information to those who are unfamiliar with PH, as well as fellow patients and caregivers who might need to be in the loop. This knowledge empowers us to make informed decisions and support the right causes, including backing organizations that fund research for better treatments and a cure.

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Attending conferences and making connections

Earlier this year, I had the incredible opportunity to attend the Pulmonary Hypertension Association’s International PH Conference and Scientific Sessions. That August weekend in Indiana was filled with connections, mutual support, and a palpable sense of hope. I attended numerous sessions and engaged in many conversations with healthcare and pharmaceutical professionals. The air was buzzing with optimism as we learned about new clinical trial opportunities, which often pave the way for new treatments. Of course, my “PHriends,” both old and new, were part of this experience as well. Sharing my nearly two-decade journey with PH offered a glimpse of hope to many I spoke with.

These events are a melting pot of patients, caregivers, industry professionals, and nonprofit organizations related to PH. The personal connections made at them strengthen our community and offer hope and comfort.

As you can see, advocacy is a year-round effort for me, because PH is a constant in my family’s life. I frequently contact local, state, and federal officials to ask them to support critical legislation like the Supplemental Oxygen Access Reform (SOAR) Act of 2024, the Safe Step Act, and the Help Ensure Lower Patient (HELP) Copays Act.

I’ve also been on another exciting adventure this year as I’ve been contributing to an upcoming book called “Positively Rare,” which will launch Nov. 20. I’m thrilled to be among the featured writers sharing our stories of living with rare diseases. I believe that my chapter, which delves into my journey with PH, will deeply resonate with others facing similar challenges. A portion of the proceeds will benefit Global Genes, a nonprofit organization that is rich in resources for rare diseases.

As I continue to navigate the shift from being a nurse to being a patient, I aim to inspire and empower those with rare diseases by letting them know that they’re not alone and that hope is always within reach.

While I’ll certainly take time to create new memories and enjoy my loved ones this holiday season, I’ll also be brainstorming my next advocacy efforts.

What are your plans for PH Awareness Month? I’d love to hear about it in the comments below. 

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.