The more often you share your own experiences living with Myotonic Dystrophy, the easier it can be for you to deal with them. Sharing your experience with people who are living with DM may help them to better live with the daily challenges we all face. You will be part of a larger community striving to meaningfully live their lives with DM.
We understand that your life cannot be summed up on a single story. The purpose of this project is to share positive imputs and life experiences with others affected. Try to follow our suggestions to focus on a memorable experience or a positive inputs that you want to share with others.
Every computer-based and manual translation of a text into another language is an interpretation. Please understand that the beauty of your native tongue cannot be fully appreciated. Something may be "lost in translation". However, the selected testimonials for the book project are corrected by a DM-affected individual in his/her native language in order to reproduce your story as authentically as possible. We will avoid a change in content or a reduction in length in an effort to convey the most objective possible picture of your positive life experiences.
We ask you, in your story, not to give any information that may offer any clues to your personal identity or your place of residence. In this way, you protect yourself and your privacy. We trust that your story is authentic and accurately reflects your personal perceptions and reality. We need your e-mail address so that we can inform you about the development of the project and in case something goes wrong in the data transmission. We guarantee you that we will not share your email address with third parties. At any time, you can request the withdrawal of the publication of your story on RareConnect from the "Our voices - Our Life" team or the RareConnect team directly.
The book will contain around one hundred stories, about thirty of which will be presented at the project celebration in Basel. The selection of stories for the Book Project will be made by the project leaders. The project leaders will make every effort to achieve balance in the number of countries represented by stories/authors. If your story is selected for the book or for presentation at the project celebration in Basel, you will be contacted as soon as possible.
The project runs for a period of two years beginning at the opening of the website and ends with the worldwide simultaneous presentation of the book, "Our Voices - Our Life", at the project celebration in Basel, Switzerland. You can still submit your story after the project is completed. We will continue to publish them in the online community of www.rareconnect.org. However, these stories cannot be considered for the Book Project.
DM1 and DM2 are types of Myotonic Dystrophy. Although the genetic origins of the two types of disease are different, many of the symptoms are similar. Together, we benefit from similar therapeutic approaches and often need the same tools. Sharing your personal experiences helps greatly to influence the public perception of our common needs and can help other affected people to deal with their life situation even more positively.
Questions and answers
Why should I participate as an affected individual?
I am affected by Myotonic Dystrophy DM2 (PROMM)...
I would like to write more than one story
Will the machine translation of my review be exact?
How confidentially are my details treated?
Who selects the stories for the Book Project / the Project Celebration?
When will the project be completed?
What happens to my data after completion of the project?
Why should I open a free account at RareConnect?
We will soon offer you the possibility to read all the stories on our website. For the time being, you need to sign up with RareConnect to do so. This further allows you to connect with the author and to comment on the stories. The process is free and easy. You will find detailed instructions on this website to help you with the process.
For the duration of the project, our websites have their own domain. After completing the project, we will close the domain and the pages will be available under a different free domain name. On the date of the worldwide presentation of the book, we will delete your e-mail address. The submitted stories will remain available in the RareConnect online community.
How is the project financed?
The project is based on the voluntary and unpaid support of individuals affected by DM and of their family members and friends worldwide. This allows us to avoid costs. The only fixed costs are the fees for the websites and for the domains. These are financed by our sponsor, the Foundation Telethon Aktion Schweiz.