Challenges in everyday life as well as the lack of medical and therapeutic options lead to overburdening and increased stressful situations, especially with rare diseases
Patients with rare or complex diseases are often overwhelmed when it comes to finding their way within the healthcare system. Access to possible therapies, treatment centers, aids, and trustworthy information for the better handling of the illness requires almost expert knowledge. In addition, the legal frameworks, especially those in social legislation, feature a structure that is difficult for those affected to keep track of. Requirements to enter the system, responsibilities, and different rights to claims result in an unclear overall picture for people living with rare or complex diseases.
The practical location of support possibilities through self-help groups, internet research, specialized counseling services and clear navigation to the different therapeutic offers is a chance to help those affected in their situations.
This is why admedicum and the German Society for Muscular Diseases (DGM) are developing patient2care, a novel digital offering that will be created with and for patients with rare or complex diseases. patient2care empowers patients and their families to receive help and support tailored to their individual needs in dealing with diagnosis, management of everyday life, and the associated requirements.
Patients with neuromuscular diseases in the drivers’ seat
A first practical application for the novel digital approach of patient2care is the particularly difficult and extensive field of neuromuscular diseases.
“We are very pleased to be working with the DGM – a partner that is such a highly competent and recognized patient organization – to develop therapeutic first application for patient2care,” says Dr. Andreas L.G. Reimann, managing partner at admedicum.
In Germany, more than 100,000 people live with a neuromuscular disease. Almost all of these diseases are unfortunately still incurable to this day. They include, for example, diseases such as spinal muscular atrophy (SMA) or amyotrophic lateral sclerosis (ALS). For this very reason, it is important to support those affected in their questions, worries and needs. And this is exactly the idea of patient2care®.
Patients become co-owners of patient2care®
“What we like about patient2care® is the innovative “co-ownership” approach, says Joachim Sproß, Managing Director of the DGM. Co-ownership means not only that the development of the platform is done in collaboration with the patients, but also that they are co-owners and thus have a say in how the development is shaped.
“We are convinced that as a digital case management module, patient2care® is a great opportunity to complement existing counseling structures and thus making it easier for those affected to better manage their everyday lives,” Sproß continues.
The starting point for expansion to other complex diseases
For admedicum, the pilot project in the neuromuscular field is the first step. In the future, the patient2care® platform will be able to be used for other complex or rare diseases. “A gradual expansion to other disease areas is planned. This is why we would be more than happy to welcome further participants and stakeholders from the ranks of patient organizations,” says Andreas Reimann, describing the future plans.
About the DGM:
With more than 9,100 members, the German Society for Muscular Diseases (DGM), based in Freiburg, is the largest and oldest German self-help organization for people with neuromuscular diseases. For over 50 years, the DGM has been promoting research into the more than 800 different muscle diseases known today, some of which are very rare. An important task of the DGM is also to advise and support affected persons and their relatives in their everyday lives. Informing about muscle diseases and representing the interests of people with muscle diseases in health policy are further central concerns of the self-help organization.
About admedicum:
admedicum brings together the efforts and services of healthcare companies and the needs of patients. The decisive factors are credibility, genuine cooperation and a sustainable benefit for all. admedicum® is oriented towards the general welfare and always pays attention to transparency, independence of all partners and the preservation of human dignity.
admedicum® are specialists for patient involvement and patient access in research, development and the distribution of pharmaceuticals, medical devices and services. In Germany and Europe, admedicum networks the knowledge and skills of patients, patient organizations, and patient groups.
The team of admedicum knows the requirements of patient advocacy and self-help as well as of the industry from years of practical experience. Our special expertise is to harmonize patient benefits and corporate success in all projects and to bring them to measurable results.
Persons responsible and contact persons:
German Society for Muscular Diseases (DGM) e.V.
Joachim Sproß, Im Moos 4, 79112 Freiburg, Germany
Tel.: +49 (0)7665 / 9447-0, info@dgm.org
admedicum GmbH & Co KG
Dr. Andreas L.G. Reimann, Industriestrasse 171, 50999 Cologne, Germany
Tel.: +49 (0)2236/9473360, info@admedicum.com
