WhatsApp Support Group for our Members
In order to conveniently and effectively disseminate information for and among patients with amyloidosis, Amyloidosis Austria is in the process of setting up a WhatsApp group for members, their relatives, and others affected by amyloidosis. The idea behind the creation of the group is to facilitate communication amongst the Amyloidosis Austria members.
We have already begun inviting those members who provided us with a mobile number and who are currently active on WhatsApp. In the event that you received such an invitation and are interested in joining the group, please accept and feel free to engage as part of the Amyloidosis Austria community.
For anyone else interested in joining, kindly get in touch with us via our firstname.lastname@example.org e-mail. In order to receive a WhatsApp invitation to the group, please ensure that you are registered with WhatsApp and don't mind giving us your telephone number.
Amyloidosis Awareness Month - March 2023
As March is Amyloidosis Awareness Month, we would like to draw your attention to an extremely valuable website. For those who understand English well, the articles on this website are very informative. Please check whether you find the information there useful and let you us know how you benefited. All articles can be found at: Amyloidosis Support Groups - AmyloidosisSupport.org
Austrian Health Forum Podium Discussion
This year’s International Rare Disease Day paved the way for the Austrian Health Forum, a network of established professionals from various professional fields to address the question as how our healthcare system can work towards better addressing the needs of patients with a rare disease. As these issues pose complications on many levels for healthcare experts, patients and their families, the exchange centered on identifying some of the relevant concerns patients have. In the event you are interested in following the discussion, click on the link below.
Looking for patients interested in testing a "symptom observation" app
There is a new application developed by a pharmaceutical company (Alnylam), which is supposed to help with the observation of symptoms and their changes, and in the discussion with the doctors during the regular consultations, to facilitate the decision about necessary changes in the therapy or accompanying measures.
The idea of such a tool is great. However, I have not yet used this app myself and would like to gain experience with it in the next two months.
Who would like to join this test? Please register via Info@amyloidosis-austria.at and take part in the test. After 2 months, we will send you a questionnaire to find out your personal impressions. We will summarise the results and then invite you to a joint zoom to discuss the results.
I would be very happy if many of you participate - for the benefit of all of us!
Info Event Innsbruck
Please be advised that our annual info event in Innsbruck will be taking place on 22.09.2022 at 16:oo in the Medizinzentrum Anichstraße 35, Seminar Room 3, 1, lower level. This differs to the information provided in the patient letter. We are looking forward to receiving your registrations.