Rare disease communities have flowed from pharmaceutical companies to doctors to patients. Through the internet and social media, patients  have  access to not only medical journals, but also other patients and caregivers dealing with the same illness. The average person does not have the medical expertise or scientific training to interpret some of the information, but it does provide access, learning and the opportunity to  ask questions. 

You can learn some lessons  from the rare disease community 

1. Create guidelines for dealing with patients

This allows pharmaceutical companies to convey a consistent message internally and  set external expectations Useful for. Many advocates are unaware of the constraints run by pharmaceutical companies. Genzyme publicly shares the principles of collaboration. I asked Jamiering, Senior Director of Patient Assistance, about these principles. “As a Genzyme advocate, we are very proud  that these values ​​have always been applied over the years. Make sure that all collaborations with the community convey credibility, value and respect. The company has  launched the Genzyme Rare Community, a website for advocating for rare diseases. 

2. Build relationships with influential patient opinion leaders. 

Many rare disease communities do not have national advocacy groups, but usually there are major patient advocacy groups that use the digital space to share their views. The Internet is like a giant digital soap box that can provide visibility and  amplified audio for all patients. Orphan care companies usually have patient support staff dedicated to building relationships with these patients or caregivers. This role is separate from the marketing function. With direct access to an online audience, these  opinion leaders can be as important to the patient as the primary opinion leader (KOL) is to the physician. This means that pharmaceutical companies need to maintain relationships not only with  advocacy groups, but also with individual POLs. Pharmaceutical companies need to assess the big picture of advocacy (offline and online, organizations and individuals) when deciding who to work with.

3. Early Communication and Frequent Communication The issue of stakeholder interaction was raised by the July rare disease communities and panel of the  Orphan Drug Leadership Conference. In addition to the increasing number of patients empowered to use social media, the transparency of the drug pipeline has led to a desire for information. Dr. Jill Panetta of the Polycystic Kidney Disease Foundation said that patients with rare diseases are closely following the progress of basic research and “patients are impatient with treatment.” All speakers  agreed that it is imperative that biopharmacy companies actively engage with their supporters. The more early POL and stakeholders involved, the better. Lack of awareness and understanding can hinder participation in clinical trials. As a result, stakeholders play a much more active role in supporting clinical trial education. Continuous communication is essential, even if there are no updates. As one panelist pointed out, “If you don’t communicate with the patient community, they will think of the worst and start making things.

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