In our association, we are organized into working groups:
In the PR & Marketing working group, we deal with the question: How can we increase awareness of ZNM? Our tasks are to raise the profile of ZNM as a disease and that of the association among doctors and other people, to improve awareness of our situation, to raise money for research and the family conference and to show what possibilities life with ZNM offers. To make this possible, we create information and advertising material, such as videos, websites, newsletters, flyers, but also sunflower seed bags and T-shirts. We are working on the association’s presence on social media such as Facebook, Instagram, Twitter and LinkedIn and are looking for donations for the association. Our main goal for this year is to redesign our website and optimize our strategy on how we can receive even more donations from companies and foundations.
The Research Advisory Board consists of six association members and four external members and is responsible for announcing new research grants and processing incoming applications. After internal consultation and external review, recommendations are made to the Executive Board. The research contribution monitors compliance with the funding guidelines and checks the interim and final reports of ongoing research projects.
The “Mastering everyday life” working group helps new members to settle in, allays fears and makes connections. The “Mastering everyday life” working group provides support and tips for everyday life and promotes exchange between members.
thomas.hartmann@znmzusammenstark.onmicrosoft.com
mareen.bockstette@znm-zusammenstark.org
Members of the association have come together in the drug approval working group to inform themselves and association members about current and planned studies for therapies. This is to be achieved through contacts with researchers and participation in specialist conferences. The working group also organized webinars for members, in which researchers (e.g. Johann Böhm) reported on the latest developments. At the same time, the members want to make themselves “fit” for possible involvement in the approval process for new therapies. That is why they informed themselves about the admission process, for example by participating in the EURORDIS Summer School. The aim is for members of the association to be represented on the approval committees of the European Medicines Agency (EMA) and the German Joint Federal Committee (G-Ba). Unfortunately, the activities of the working group are currently on hold. But we want to take them back. If you are interested in these topics, please contact Ralf Leuthold or Holger Fischer. We will also present the working group at the family conference.
A group of four association members (Bärbel Nötzel, Jeno van Tienen, Ralf Leuthold and Holger Fischer) maintain regular contact with the pharmaceutical companies in our area. These are or were Audentes Therapeutics, now Astellas Gene Therapies and Dynacure. We represent the interests of association members, present them anonymously and help companies to understand our goals and views. We support companies in the approval process where we see that this will benefit us. The aim is always to obtain an approved therapy for as many club members as possible as quickly as possible. Unfortunately, both clinical trials have been stopped at the moment and it is not certain how or even whether they will continue. However, we are still in contact and hope to be able to provide you with more concrete information soon. If you have any questions on this topic or issues that we should address to the companies, please feel free to contact Bärbel, Jeno, Ralf or Holger.
We take care of keeping the homepage up to date and providing relevant information about ZNM for patients and potential sponsors. Do you have knowledge of WordPress or similar platforms and a bit of time and motivation to spare? Our homepage working group would be delighted to hear from anyone who would like to help spread our message.
Please contact Silvija at Silvija.Mostarac@znmzusammenstark.onmicrosoft.com
Judith Wartenburger
Assistenz des Vorstands von
ZNM – Zusammen Stark! e.V.
Tel.: 01515 4820534
Email: info@znm-zusammenstark.org
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