top of page
Rare360 Logo

Respecting Boundaries: Why it's important for the Pharmaceutical Industry and Its Service Providers to Ethically Engage with Online Rare Disease Communities

Writer's picture: The Rare360 Editorial TeamThe Rare360 Editorial Team

Updated: Jan 28

A glowing blue and white earth is shown with a network of white lines and dots encircling it. The continents are visible on the earth with North and South America, Africa, Europe, and Asia being the most prominent.

For individuals living with rare diseases, private social media groups serve as vital lifelines for connection, support, and shared understanding. Imagine being diagnosed with a condition so rare that even your doctor has only encountered it in textbooks. These spaces are often the only places where patients, caregivers, and families can openly discuss deeply personal experiences, exchange advice, and find solace in their journey. Given the rarity of their conditions, these private groups provide a sense of security and community, helping to combat the isolation and stigma that often accompany rare diseases.

Unfortunately, a troubling trend has emerged: some pharmaceutical representatives have been attempting to join these private spaces under false pretenses. While some may believe their presence could be beneficial, this behavior is widely perceived as invasive and inappropriate. Even the act of applying to join these groups, without answering the required questions or providing clear justification, implies dishonesty and misrepresentation. Such actions undermine trust and threaten the integrity of these safe havens.

Why Private Rare Disease Communities Matter

Rare disease communities thrive on trust, vulnerability, and shared experiences. These private groups allow members to discuss sensitive topics such as symptoms, treatment failures, and mental health challenges without fear of exploitation. The openness in these spaces exists because members feel assured that their conversations will remain private and free from commercial agendas.

Reports to the Rare Advocacy Movement (RAM) have highlighted an increase in pharmaceutical employees attempting to join private, disease-specific groups. Whether posing as patients, claiming connections to someone with the disease, or failing to provide clear reasons for joining, this behavior erodes trust and violates the sanctity of these spaces. Even if pharmaceutical representatives do not explicitly state they have the disease, the act of requesting membership in a group designated for patients and families alone inherently implies qualification. This implication itself constitutes dishonesty, as it disregards the clearly defined boundaries and intentions of these communities.

Why This Behavior is Problematic

  1. Betrayal of Trust

The authenticity and value of these communities rely on trust. Pharmaceutical representatives entering under false pretenses disrupt the organic dynamic, making members feel exploited rather than supported. For example, members may feel hesitant to discuss challenges with a medication out of fear that their feedback could be misused for marketing purposes rather than for genuine improvement. Once trust is broken, it is incredibly difficult to rebuild.

  1. Erosion of Safe Spaces

These groups often tackle deeply personal and emotional topics. The mere presence of pharmaceutical representatives, particularly those who enter without transparency, creates discomfort and undermines the sense of safety and authenticity that members rely on. Even silent membership by an unqualified individual can have a chilling effect on open, vulnerable conversations.

  1. Crossing Ethical Boundaries

Pharmaceutical companies play a critical role in advancing treatments for rare diseases, but there is a time and place for engagement. Infiltrating private spaces without consent, or implying qualification by applying to join, crosses ethical lines and damages the credibility of both the industry and its efforts to support rare disease communities.

When trust is breached, members may become less willing to share their experiences, diminishing the support and advocacy these spaces provide. Instead of feeling empowered, patients and caregivers begin to feel exploited, weakening the very fabric of these communities.

How Pharma Can Engage Respectfully

Pharmaceutical companies can and should play a role in supporting rare disease communities, but their approach must be rooted in ethics, transparency, and mutual respect. Here are some best practices for engaging with these communities appropriately:

  • Partner Transparently: Rather than attempting to infiltrate private groups, collaborate with patient advocacy organizations or reach out directly to group administrators for permission to engage. Partnering in this way ensures alignment with the community’s goals while respecting their boundaries.

  • Host Open Forums: Create spaces such as webinars, advisory boards, or Q&A sessions where patients and caregivers can voluntarily participate. These forums should be transparent, with clear communication about the purpose of the engagement.

  • Offer Support Without Intrusion: Provide resources, funding, or advocacy support without encroaching on personal spaces. Focus on offering meaningful contributions that align with the community’s needs, rather than prioritizing commercial interests.

  • Conduct Ethical Market Research: Use qualitative and quantitative tools to gather insights in a respectful manner. Ensure participants are compensated fairly for their time and input, and prioritize transparency about how the data will be used.

  • Build Long-Term Trust: Establish patient advisory panels with diverse representation to ensure ongoing dialogue between the industry and the community. Trust is built through consistent, ethical actions over time.

A Message to Remember

If you are not directly living with a rare disease or caring for someone who is, private communities are not intended for you. Respect their boundaries, their privacy, and their voices. Even the act of requesting membership implies qualification and undermines the community’s trust. The rare disease community needs partnerships, but those partnerships must be built on their terms, not yours.

Pharmaceutical companies play an essential role in advancing care for rare diseases, but this role must be rooted in ethical practices and respect for the communities they serve. By engaging transparently and meaningfully, the industry can build trust and contribute positively to the lives of patients and caregivers.

Together, through ethical and respectful engagement, the pharmaceutical industry and rare disease communities can achieve their shared goal: improving the quality of life for patients and advancing treatment options for those who need them most.

If you have questions about how to engage respectfully with rare disease communities, please contact the Rare Advocacy Movement for guidance.

Comments


bottom of page