Patients should be involved: sharing drug development news in patient seminars

Pekka Simula 31.08.2018

I wrote earlier about the important role of patient advocacies supporting chronically ill patients. Patient groups provide information and peer support, they share experiences on different kinds of therapies, improve patient rights, and so forth.

At the same time it is ironic that drug development is quite distant from patients due to strict regulations. For instance a drug development company sponsoring a clinical study of a potential future drug cannot be in contact with the study patients. Therefore even small drug development companies appreciate collaboration with patient organizations as an opportunity to interact directly with patients. Drug development is very slow and challenging and it is also highly motivating to meet patients who remind us of the importance of our work.

Small companies are seldom able to provide significant financial support to patient organizations. However we may have something else that’s considered valuable: Information. Many chronically ill patients know their disease extremely well – not just from being a patient but also scientifically. Novel discoveries relevant to the disease are of interest to many patients. Sometimes they can also bring hope of a possible efficacious future treatment.

We received overwhelming support after presenting our Lymfactin® drug candidate to lymphedema patients in June in a live webinar arranged by the patient group LE&RN. We have also discussed our work in several Parkinson’s events in the past. This fall we will collaborate with the Parkinson’s associations of Sweden and Finland to organize open seminars for patients and others interested. In Stockholm, the seminar will be held in Swedish under the title “Restorativa terapier vid Parkinsons sjukdom” (restorative therapies for Parkinson’s). In Helsinki, a similar event will be in Finnish: “Kohti Parkinsonin tautia hidastavaa hoitoa.” Participation in the events is free of charge and instructions for registration can be found behind the links above. Participating in one of these seminars will not cure anyone but hopefully it will at least reassure that the patients are not left to their own devices. People are working hard to develop better treatments for these unmet clinical needs.

The speakers in these seminars are among the best experts in their fields. Everyone interested is warmly welcome! The seminar in Stockholm is unfortunately already fully booked. In Helsinki we still have available spaces.

Herantis develops two drug candidates, CDNF and Lymfactin® aiming at breakthroughs in the treatment of Parkinson’s disease (PD) and lymphedema (LE). Respectively Herantis is a member of two patient advocacies: The European Parkinson’s Disease Association EPDA, and Lymphatic Education & Research Network, LE&RN.