This list contains selected initiatives, self-help organizations and foundations that offer support, expert information and assistance to people with Parkinson's. The list is by no means exhaustive, but rather is intended to provide suggestions for using the variety of Parkinson's self-help options depending on your needs and interests.

The information and links have been compiled to the best of our knowledge, but errors cannot be ruled out. The explanatory texts come from the respective homepages.

 Our wish is that this list continues to grow and that as many offers as possible for people with Parkinson's and their families can be found in one place and used close to where they live.

Kathrin Wersing, 01.09.2024

Other groups and initiatives can register themselves here or correct their entry.

Parkinson Association e.V. https://parkinson-verbund.de/

The Parkinson Association is a network of over 30 self-help groups and other self-help organizations. Together they want to improve the situation of Parkinson's sufferers by combining the forces of self-help and contributing to improving quality of life and everyday coping. In this sense, the Parkinson Association also sees itself as a link for self-help in Germany. All clubs, organizations, groups and individuals who are active in Parkinson's self-help and are interested in working together are welcome.

Boy Parkinson - Courage and hope for a life with Parkinson's  

https://www.derjungeparkinson.de/

Free illustrated book for young sufferers of the disease and their relatives – books can be downloaded free of charge by multipliers, sufferers and relatives.

German Parkinson's Association eV https://www.dpv-bundesverband.de/

The German Parkinson Association is a self-help group that was founded in 1981 by people who were themselves affected by Parkinson's disease. Today it has around 19.000 members and a good 450 regional groups and contact points. They see themselves as an association of people who deal with Parkinson's disease as sufferers, partners, relatives, work colleagues and people from the medical profession.

German PSP Society https://psp-gesellschaft.de/

On June 25, 2004, the German PSP Society was founded in Weil near Munich. The initiative to found the PSP Society came from those affected and their relatives who had searched in vain for information about progressive supranuclear palsy (PSP). The PSP Society was supported from the beginning by expert medical professionals and social workers.

Evanda – Living with Parkinson’s eV https://www.evanda-parkinson.de/

Self-help organization of those affected based in Frankfurt am Main, whose main goals are to support people in coping with the disease through knowledge transfer, public relations and the exchange of experiences. Evanda is a member of the Parkinson Verbund eV

Hilde Ulrichs Foundation for Parkinson's research

https://www.aktive-parkinsonstiftung.de

The mission of the Hilde Ulrichs Foundation is to enable all people with Parkinson's disease to lead an active life through non-drug therapies and to sustainably improve their quality of life.

Young & Parkinson eV https://jung-und-parkinson.de/

Jung & Parkinson is a registered self-help group that offers people with Parkinson's disease advice and support. They help to bring more clarity and overview to the new life after the diagnosis. The offer is aimed primarily (but not exclusively) at those who were diagnosed at a young age, whose needs and concerns are fundamentally different from those of older sufferers.

Move on eV https://www.shg-move-on.de/

Parkinson Self-Help Düsseldorf. The association offers people who are young and have just been diagnosed with Parkinson's a contact point and a safe space where they can talk openly and exchange ideas. Information and exchange is available at the regular monthly meetings. Experts, specialists or those affected are also invited to give specialist lectures.

MSA live https://msaleben.de/

Digital information portal for people with multiple system atrophy with a lot of helpful information for those affected, carers and caregivers.

Nina's pd toolbox https://youtube.com/@ninaspdtoolbox259/  

...is a private initiative by Nina Juncker. She herself suffers from Parkinson's disease. On her YouTube channel of the same name, she shares her "small" archive, consisting of video tips with 43 German, 97 English and 16 Spanish playlists about Parkinson's and exercise, as well as 291 linked YouTube channels. Nina's pd toolbox is also represented on Instagram with further information.

Parkinson Forum Freiburg

https://parkinson-forum-freiburg.de/

The Parkinson Forum Freiburg is an independent self-help group for Parkinson's sufferers, their relatives and partners, and other interested parties in the Freiburg, Breisgau, Markgräflerland and Black Forest areas. They offer a wealth of information and support on the subject of Parkinson's disease, and describe our services as support.

Parkinson Forum District Steinfurt https://www.parkinson-steinfurt.de/

The forum organizes monthly club meetings with specialist lectures for its members in the Münsterland area, offers competent contacts, trips and joint activities.

Their goal is to improve the quality of life for people with Parkinson's disease and their families. To this end, they are also committed to health policy.

Parkinson Forum Unna https://parkinson-unna.de/

The forum aims to help improve the living conditions of Parkinson's sufferers and their partners by helping them to help themselves. They offer a wide range of information about the disease and therapies, help in coping with everyday life, exchange of experiences, joint sports and activities for those affected and their relatives.

Parkinson Initiative Kempen

https://parkinson-selbsthilfe-kempen.de/

Independent self-help group for people suffering from Parkinson's disease, their relatives and other interested parties. Mutual support, exchange of experiences, joint exercise and celebrations as well as specialist lectures and knowledge transfer are offered.

Parkinson's Journal https://parkinson-journal.de/

The Parkinson Journal is a unique collection of information on the subject of Parkinson's disease. Its numerous articles (texts, videos, guides, directories or podcasts), written or produced by well-known authors, often affected themselves, have become companions for many sufferers, relatives and those seeking advice over the years. The authors have set themselves the goal of researching and providing information with particular care.

PARKINSonLINE eV https://www.parkins-on-line.de/

PARKINSonLINE, the Parkinson's self-help group on the Internet, is a non-profit organization in which people suffering from Parkinson's disease from all walks of life can easily get in touch with one another. The organization also operates a forum, a chat and various video chats on the Internet. It is also possible to get to know people in real life through workshops or the annual chatter meeting. The workshops, which last several days, are training courses on health topics. The ParkiPedia database connected to the website contains collected patient knowledge. Experiences about Parkinson's disease from sufferers for sufferers. PAoL is the first and oldest Parkinson's online self-help organization in German-speaking countries, having been around for over 22 years.

Parkinson’s so what? https://www.parkinson-na-und.info/

Private initiative by Sven Trautner, who, with his extensive and informative website, provides practical tips for everyday life with Parkinson's for those affected and their families.

Parkinson's sponsor https://parkinsonpate.org/

Help from those affected for those affected. Parkinson's sponsors are people who suffer from Parkinson's themselves or relatives who accompany other sufferers individually and in 1:1 contact and who are on hand with help and advice, especially in the difficult early days. Initial contact with one of the Parkinson's sponsors is particularly useful for people who do not (yet) want to take the step of meeting in person in a self-help group. Together we look at which of the sponsors is the right fit for them and how the contact can be arranged. Parkinson's sponsors are members of the Parkinson's network.

Parkinson's Europe https://www.parkinsonseurope.org/

Parkinson's Europe is the only European Parkinson's umbrella organisation and has been working with and supporting the global Parkinson's community for almost 30 years.

As the leading voice for Parkinson's in Europe, it provides trusted information; promotes good treatments and strategies for managing Parkinson's, raises awareness and improves understanding of the disease, and supports research collaboration. Parkinson's Europe's vision is to give people with Parkinson's and their families access to the highest standards of treatment, support and care they need to live fulfilling and enjoyable lives.

Parkinson Self-Help Bremen https://psbremen.de/

The group aims to offer Parkinson's sufferers and their families reliable support and exercise opportunities in order to increase their enjoyment of life and improve their quality of life. Weekly dry and water gymnastics groups take place in the Bremen area, as well as many other joint activities and outings.

Parkinson Foundation https://parkinsonstiftung.de/

The Parkinson Foundation is committed to providing comprehensive information about the disease and promoting further research into possible forms of therapy. The foundation was founded in Berlin in 2019 by the German Society for Parkinson's and Movement Disorders.

PD Avengers https://pdavengers.de/

The German section of the PD Avengers, founded in North America in 2020. They see themselves as a global alliance to overcome Parkinson's. The initiative wants to link local actions with the global movement, inform about news from the global movement, bring together self-help groups and self-help associations in Germany and take action together. 

PingPong Parkinson https://www.pingpongparkinson.de/  

PingPongParkinson Deutschland e.

The association supports those affected by regular table tennis training at around 200 bases across Germany. It also offers an exchange of experiences, information and support. Since many of the symptoms of Parkinson's cause those affected to withdraw from public life, the association wants to use its commitment to encourage them to remain a visible part of society and to deal actively and openly with the Parkinson's diagnosis.

"Right now" podcast https://jetzt-erst-recht.info/

How can you manage to make life positive, worth living and colorful despite the life-changing diagnosis of Parkinson's? Kathrin Wersing, who herself suffered from Parkinson's at the age of 40, speaks in her podcast with people who live positively with the disease in many different ways. A podcast that is intended to be encouraging, by those affected for those affected, relatives and anyone looking for a positive approach to the topic of Parkinson's.

project:dance https://projekttanz.jimdofree.com/

Dance is an encounter with yourself and others. For the dancers of projekt:tanz, dancing is also an encounter with their illness, Parkinson's disease. They have several dance projects in Hamburg, including at the Kampnagel Fabrik, and they offer further training for dance teachers.

PSH-Parkinson Self-Help Association Brandenburg eV

https://www.psh-lvbb.de/ 

Self-help association in the state of Brandenburg, which supports those affected with advice and action after a diagnosis, as well as offering exchange of experiences, activation offers and training. The guiding principles of the association are: "Look - Act - Help" and "Come out of your shell".

Self-help group Munich Dachau

...

Dance the Batman https://tanz-den-batman.jimdosite.com/

There is nothing better than starting the day by dancing! Dance the Batman is a dance community of people with Parkinson's, relatives and friends. Every morning from 8 a.m. the group meets online via Zoom for 30 minutes to dance freely to changing playlists. Afterwards there is a short group discussion. Participation is possible at any time without obligation and free of charge.

Yuvedo Foundation https://www.yuvedofoundation.de

The aim of the Yuvedo Foundation is to remove Parkinson's disease from the list of incurable diseases by 2032 by developing suitable problem-solving strategies - together with clever personalities from science and research. On the basis of this "master plan", the necessary financial resources are to be raised and the plan put into action. The committed people behind the foundation want to show that there is serious reason for hope if politics, patients, science and business tackle the issue decisively - and that Parkinson's can be removed from the list of incurable diseases through many small victories.

Zhineng Qigong http://zhinengqigong-freiburg.de/

Due to his personal history, Jürgen Kotterer finds it a matter close to his heart to convey the technique and theory of Zhineng Qigong to chronically ill people. He regularly offers free courses for people with Parkinson's disease and a weekly online exercise evening for people with Parkinson's disease.

List for download