Courtesy of Camilla Krogh Lauritzen, Chief Patient Officer, Rare Diseases, LEO Pharma
At LEO Pharma, we know that people living with rare diseases are experts in their own right: They are indeed disease experience experts. We also appreciate the relevance for us to listen and learn from this expert group, and that an increasing number of people living with rare diseases do want to be involved in decision-making that involves them. This includes wanting to share their insights and advise with e.g. manufacturers of new treatments such as LEO Pharma.
Consequently major educational initiatives such as EUPATI (click here) by the European Patients’ Forum (click here) have been put in place to allow disease experience experts to educate themselves in the basics around medicines Research and Development (R&D).
Moreover, pharmaceutical companies have started building initiatives that ensure disease experience experts may be included in the internal R&D processes (as has historically been the case for other external experts, such as medical doctors).
In August 2019 the rare disease unit at LEO Pharma launched a pioneering commitment and concept referred to as ‘Nothing About You Without You’ (click here); a commitment to listen to and take advise from disease experience experts, aka ‘patients’ and their immediate caregivers – spouses and parents. To facilitate and ensure this from the get-go the Expert Partners & Innovation Consultants (EPIC) initiative was developed.
EPIC is a mechanism that allows disease experience experts to serve as insight providers and advisors to LEO Pharma at the discretion of each individual EPIC member:
As an EPIC member, you are invited to take part of an international panel of disease experience experts. As part of this panel you will, on an ongoing basis, be offered concrete opportunities to educate and advise LEO Pharma employees. The latter are people responsible for defining or implementing Research and Development (R&D) activities that aim at the development of future solutions. In other words, you are offered an opportunity to shape the design of future treatments. The advice, insights and knowledge that you share with us are – to the greatest extend possible – incorporated and reflected in designing and implementing of LEO Pharma’s R&D activities.
Currently, we are looking to expand our EPIC initiative with around 30-40 people from across the world who have direct experience/live with Gorlin Syndrome, and a wish to share their insights and advice with us and our partner PellePharm in our joint mission to bring a new treatment for Gorlin Syndrome into life.
About LEO Pharma
LEO Pharma helps people achieve healthy skin. The company is a leader in medical dermatology with a robust R&D pipeline, a wide range of therapies and a pioneering spirit. Founded in 1908 and owned by the LEO Foundation, LEO Pharma has devoted decades of research and development to advance the science of dermatology, setting new standards of care for people with skin conditions. LEO Pharma is headquartered in Denmark with a global team of 5,500 people, serving 76 million patients in 130 countries.
For more information about LEO Pharma:
The Gorlin Syndrome Group are currently working in collaboration with LEO Pharma and associated partners on the development of new drugs and the launch of clinical trials. If you would like to learn more, please reach out to Lasse Funch Jacobsen at LEO Pharma on e-mail: FHUDK@leo-pharma.com.