Advocacy for rare diseases is at the core of Green Room Communications, and Rare Disease Day (RDD) gives us the opportunity to reflect on how we can spread awareness for people impacted by rare diseases. At Green Room, advocating for people with rare diseases is a part of our overarching mission of keeping patients and caregivers top of mind in our healthcare communications work. To recognize RDD, we asked our team to share why raising awareness for rare diseases is so important to them – starting with our agency founder’s Deborah Fowler and Karen Carolonza who have close ties with the rare disease community both personally and professionally.
Deborah Fowler, Founding Partner, explains that “A disease is only rare until it happens to you. Then, it becomes the center of your universe. You realize how simple questions, such as ‘What can you tell me about this disease? Are there any treatments? What will the future hold?’ many times have no answers. Having lived this scenario, raising awareness about rare diseases and empowering rare voices have become my passion. It is also another way that we embody diversity, equity, and inclusion. DE&I isn’t only about race, gender, and ethnicity. It’s about giving a voice to underserved and underrepresented populations. This includes patients with rare diseases, as they often feel excluded, alone, and misunderstood. Education is one of the most important ways that we can realize health equity as a society, by empowering the rare among us which can lead to research, treatments and more importantly, hope for a brighter future.” Deb is also the founder of Soft Bones—a non-profit foundation that provides information, education, and support for people living with hypophosphatasia (HPP), their families, and caregivers—which was born out of her son’s journey with the rare bone disease, and ultimately played a key role in bringing the first FDA-approved treatment for HPP to patients.
For Karen Carolonza, Founding Partner, shares that “Raising awareness of rare diseases is so important to me because unlike more common diseases that impact many families, there is a big gap in understanding how to treat them and why. Because they are ‘rare,’ these diseases do not get the same attention in the public eye and therefore advocates must fight harder for recognition, funding, education and ultimately, patient care.”
For Heather Rose, Senior Vice President, helping patients became her “why” after working on the first-ever awareness campaign for the rare disease pulmonary arterial hypertension (PAH). “At my first job, I had the chance to speak one-on-one with patients and caregivers impacted by PAH. Those conversations were eye-opening. There is one young woman I will never forget. She was in her early 20’s, like me at the time, and was a gifted opera singer. Despite needing two double-lung transplants, she continued to be a warrior who lived life to the fullest. Medicine extended her life 15 years after diagnosis. Medicine made by companies that need communications support as they innovate for patients in need. I get to be part of that process, and when I step back and remember that, it reaffirms that I am absolutely living my purpose to help others.”
Allison Pishko, Senior Vice President, shares that she learned firsthand how the role of the caregiver is often unappreciated and underestimated – even more so in the rare disease community. “By definition, when someone you love is impacted by a rare disease, there are so few people that truly understand your journey and challenges. Working in healthcare communications gives us the opportunity to help create communities of caregivers who can share information, support and empathy. Joining some of these groups as a caregiver myself, has provided me with knowledge and an invaluable community. #LHON”
Maura McBride, Vice President, shares that “After a rare (or underdiagnosed) condition landed me in the neuro-ICU in my 40s, I set out on a long journey to recover my ability to eat and to walk and to manage my risk factors. My only symptom of the condition was migraines, especially during intense, high-impact exercise. A year later, I learned I had a second rare disease, one that was present at birth but treatable through inexpensive, life-long injections. The scientists who discovered the treatment for pernicious anemia were awarded the Nobel Prize in the 1930s. Awareness of rare disease means hope – for diagnoses, treatments or cures – for the estimated 7,000+ people in the U.S. and their families who are impacted. #FMD”
Julie DeVoti, Assistant Account Executive, shares her experience with family members with amyotrophic lateral sclerosis (ALS), cyclic vomiting syndrome (CVS), dissociative identity disorder (DID) and other undiagnosable afflictions. “I enjoy working in healthcare communications because I help clients reach patients who can use the companies’ products to decrease pain and improve the quality of patient’s and caretaker’s lives,” Julie explains. “We can create awareness campaigns that educate the public on a rare disease and how to advocate for those living with it. RDD is important to me because when each of us educates ourselves and others on rare diseases we can create more inclusive environments.”
At Green Room, we recognize Rare Disease Day as a day dedicated to advocating for patients, caregivers and families who have been heavily impacted by the burden of rare diseases. Beyond our personal connections, we are united as communicators to continue our efforts in bringing additional awareness to, and advocating for, people impacted by rare diseases. To join in raising awareness and supporting the rare disease community, go to RareDiseaseDay.org to learn more.