Rare disease caregivers play a unique role in the patient journey and experience. The nuances of rare diseases require caregivers to become advocates, educators, and warriors, fighting for their loved one who may not be fully supported by existing healthcare services. From tireless research into their condition, to daily up-close experience with its manifestations, caregivers are a critical part of a patient’s journey and an invaluable source of real-world data that can help healthcare professionals deliver better care—and guide companies to create better solutions. Their hard-earned knowledge can help pull back the curtain on the diagnostic process, the treatment experience, and the barriers to access.
Rare Disease Communities: Powerful Allies for Advocacy and Education
In the United States, approximately two-thirds of those living with a rare disease are children. Additionally—no treatments are available for approximately 95% of these diseases, and their rarity means research is limited.1 “This lack of information and resources often places the burden of managing a rare disease2 on the shoulders of patients and caregivers,” says Afshan Hussain, General Manager of Rare Disease at Fishawack Health (FH).
Rare diseases have a significant impact on families because parents, spouses, and other relatives are the most common caregivers for those patients. Even if formal caregiving help is available, family caregivers still bear most of the responsibility,3 especially for patients with complex medical needs that may require at-home equipment, constant monitoring, and regular interaction with the healthcare system.
Healthcare and social systems are often not prepared or equipped for the unique challenges of providing care to people with rare diseases.4 That’s why it’s critical to harness the powerful and informed voices of caregivers with great potential for better overall experiences.
The medical community may not have adequate clinical or experiential data to offer sufficient support, but caregivers do. They are on the frontlines of the patient experience and can offer a wealth of insight and information.
These are exactly the kinds of partners the life sciences industry can work with. “Faced with a lack of centralized information, support, and resources from institutions, caregivers often build their own communities from scratch, dedicated to sharing resources, raising awareness, and fighting for anyone affected by a rare disease,” notes Afshan. With exposure to many facets of the community and often slipping behind doors that industry leaders and healthcare professionals don’t have access to, caregivers offer untapped knowledge. Connecting their observations with experts and stakeholders can reveal a pathway to better symptom reporting and management, yielding more positive outcomes.
Supporting Rare Disease Communities Means Developing More Than a Therapy
Rare disease caregivers are fighters on many fronts. From the challenges of an accurate diagnosis, to the pursuit of answers amid a landscape where reliable information is unclear or uncertain, caregivers are relentless in their drive for answers and treatment options.
Improved patient outcomes are often a brand’s primary goal, but clinical focus is not the only path to success—particularly in rare disease. Marielle Czabaranek, FH Brand Strategist, says, “Rare diseases are so all-consuming for caregivers and families that manufacturers find greater success if they provide not only a therapy, but well-rounded support and consideration for the nuances of treatment.”
“To provide support for a rare disease community is to provide support from beginning to end,” Marielle says. “This doesn’t stop with a diagnosis or even the patients themselves, but typically means a lifelong therapy involving a host of healthcare professionals, caregivers, and other stakeholders.”
Building Authentic Relationships with Thoughtful Engagement
Marketers must respect the unique expertise of rare disease caregivers and acknowledge the powerful role they play in shaping outcomes for people with rare diseases. Bringing these tireless advocates into the “inner circle” of product development can give marketers a glimpse into their tight-knit and often closed communities, while providing the perspective they need to build better solutions.
At the National Organization for Rare Disorders (NORD) Summit in 2022, our team heard caregivers share stories about building their own support circles piece by piece, refining along the way with every misdiagnosis, treatment change, and challenging dialogue with a provider. During the Summit, one panelist who fought a rare pediatric cancer described the impact his disease had on his mother. The other panelists, mostly advocacy or industry leaders, began commenting on all the resources available to caregivers. While they were talking, a woman in the front row slowly shook her head in disagreement. During the question period, she introduced herself as the young man’s mother, saying that in fact, almost no resources were available to her.
“Historically, it’s been, ‘Let me create something and then ask for feedback,’” says Afshan. “But caregivers don’t want to be told what they need. They want to be able to tell us—and for the industry to listen and respond.” When caregivers are heard, and their experiences validated, partnerships and alliances can form for the mutual benefit of both caregivers and the companies providing the products and resources they need.
Partnerships and Alliances Support the Full Caregiving Experience
Caregivers carry with them a wisdom and resilience that comes from living through an experience. An authentic partnership starts with listening and grows from there. These connections reveal unmet needs, allowing us to make the full experience of rare disease caregiving more personal, more helpful, and more real. When we are partners in the journey, we can begin to meet people wherever they are.
“A patient’s rare disease impacts the full family unit—this is an important nuance for marketers in this space to recognize, particularly as caregiving extends beyond the patient alone,” says Dawn Hastings, FH Group Creative Director. “If you are going to provide resources for those living with rare diseases, you have a mandate to build a relationship with the community so that you develop resources that feel relevant to their needs.”
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