- Who is admedicum?
admedicum brings together the 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 common good 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 offering of drugs, medical devices and services. We network the knowledge and skills of patients, patient organizations and healthcare companies in Germany and Europe.
- Who is the DGM?
The German Society for Muscular Diseases (DGM), based in Freiburg, is the largest and oldest German self-help organization for people with neuromuscular diseases, with over 9,100 members. 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. Providing information about muscle diseases and representing the interests of people with muscle diseases in health policy are further central concerns of the self-help organization.
- What is patient2care about?
patient2care is a new type of personal patient guide that is being developed with and for patients. It enables patients and their relatives to quickly and easily find helpful information and support on many issues related to their illness.
Access to possible therapies, treatment centers, aids or, more generally, to trustworthy information on how to better deal with a rare or complex disease, is often problematic. patient2care helps patients to find the right answers and to use suitable digital aids. patient2care helps patients to better find their way in the health care system.
In a pilot project together with the German Society for Muscular Diseases (DGM), we are developing patient2care for 4 neuromuscular diseases: ALS, myositis, FSHD and SMA.
- What happens to the data?
We are aware that the protection of privacy when using our websites is an important concern. Therefore, compliance with the legal regulations on data protection is a matter of course for us. Furthermore, it is important to us that you know at all times when and how we collect and store which data and how we use it.
- What are the sources of the information?
We develop patient2care together with the German Muscle Society (DGM). The information used comes either directly from the DGM or from other sources that are assessed as trustworthy by the DGM and admedicum.
- How can patient2care help?
patient2care is primarily intended to help people who have recently been diagnosed with ALS, SMA, FSHD or myositis. In addition, patient2care is also there for relatives of those affected. Users of the personal guide can find a variety of information - from suitable treatment centers to applying for services and aids. But patient2care also helps with topics such as therapy, diagnostics and the general description and symptoms of the diseases.
- How can you contact us?
You are welcome to contact us via our contact form There you can also sign up for information on further developments of patient2care. Please do not provide any medical data with your questions! Only use our personal guide for this purpose.
- The information did not help me. What can I do now?
You are welcome to contact us by mail and submit new topic suggestions - we will review them promptly and get back to you. Since this is a test version, it is possible that not all topics are fully covered yet. We apologize for this. If your concerns include topics such as medication, side effects of therapy or similar medical issues, we ask you to seek discussion with your attending specialist(s).
- Will patient2care also be available for other diseases?
Currently, the digital guide is available for four neuromuscular diseases: ALS, SMA, FSHD and myositis. patient2care is an open platform that enables the inclusion of other diseases.
- How is patient2care structured and how does it work?
patient2care covers various topics and aspects of the 4 neuromuscular diseases. These can be roughly divided into the following areas: Treatment & Therapy, Description of Diseases, Daily Life & Occupation, Assistive Devices, Social Services and Organizations. As soon as you enter your question, input suggestions are made. These are questions that other users of the personal guide have already entered. You are welcome to use these suggestions as a guide or continue to formulate your own questions.
If the guide does not know the answer to your question, you will be asked to rephrase your question. If this also does not lead to a result, you have the possibility to contact us via the feedback form. We will take care of your request in a timely manner.
- What are the goals of the guide?
We want to offer patients and their relatives a helpful platform to quickly and easily obtain information and support about their illnesses. In addition, patient2care enables patients to get in touch with trustworthy contact points and partners. In this way, we would like to help those affected to find their way around the healthcare system more easily.