On March 23rd, The Jansen’s Foundation had the honor and sheer pleasure of meeting the wonderful Endocrine team at Boston Massachusetts General Hospital.
The team has been researching Jansen’s Disease for about 20 years, but never met a patient with the condition. So it was a pivotal moment for both patient and team; it makes research and its results more relevant to patients.
Walking through the lab was surreal. To witness first-hand the passion, drive and genius it takes to work on a cure for Jansen’s left me with a resounding sense of hope for the future. In the last couple of years, the team has not only successfully modeled a Jansen’s PTH receptor, but also is close to unlocking some of its mysteries.
It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to live with a rare disease. The levels of pain, the constant surgery and care, were all relevant to the cause they are working on.
As patient partners and researchers for Jansen’s disease, we share our experience to develop a patient-centered project. We can and will continue to use our experience to share how the patient voice can affect the execution of research and to provide a model for meaningful collaboration.