Clinical Trials

Biography

Ramona Kanters is a thirty-nine year old (mother of two) who was diagnosed with Systematic Sclerosis at the age of 32. (Systematic Sclerosis is a rare autoimmune decease that occurs in one out of 10.000 people. It involves the thickening and scarring of the skin, muscles, joints and organs.) After a year of extensive chemotherapy and a stem cell transplantation (that saved her life) she decided to devote herself to the support and accompaniment of fellow patients and their partners. For this purpose she established a foundation to enhance the awareness concerning this grave but rare disease. She provides lectures, workshops and counselling sessions at home and abroad, and has recently published a care report in which the system of care surrounding Systemic Sclerosis is analysed, which has been internationally published. During her activities Ramona has found that it is of crucial importance to involve patient in their own care. She advocates that when patients, physicians and pharmaceutical companies will start to work as a unity, care can be greatly optimized. Ramona: ‘Give patients a voice, let doctors and those working in pharmaceutics see the person behind the patient and let the patient see the real person behind the physician. This will make an enormous difference in their wellbeing’. In 2015 Ramona started her own company which she called OPEN for its focus on open communication: OPEN, to listen to one another; OPEN, to communicate; OPEN to participate and OPEN to learn from one another. One of her primary activities is finding patient panels for patient participation programmes in all different areas. She represents a great range of relatively unknown and known illnesses. OPEN is currently working with several pharmaceutical companies and market research bureaus who have already recognized the great value of patient participation and she hopes to continue doing so in future.

Research Interest