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For Rare Disease Day on February 28, 2025, we had the opportunity to give an interview about amyloidosis and introduce our association. The interview can be read in the "Rare Diseases" supplement in the Brigitte issue from March 19, 2025, to April 1, 2025.

Here are the online contributions:

We look forward to many readers!

The Knowledge Weeks will take place from February 15 to March 14, 2025, on selpers.com.

During this time, you will receive information about various rare diseases, can watch expert presentations, read stories from those affected, test your knowledge in interactive quizzes, and much more. The Knowledge Weeks are free and require no registration.

You can find the program at selpers.com/seltene-erkrankungen.

Our third exchange for patients and relatives was held on March 7, 2025, in Lucerne.

16 people, including four accompanying persons, participated. The majority of those affected suffer from ATTR amyloidosis, one person from AL amyloidosis. The exchange was very open and dynamic.

Many patients reported a gradual decline in performance, which was initially misattributed to other diseases. On average, it took 4-6 years until the correct diagnosis. In addition to amyloidosis, accompanying conditions such as carpal tunnel syndrome, heart problems, or spinal canal stenosis often occurred.

The accompanying persons gave impressive accounts of their support in everyday life and during medical visits. Family members have a tremendous influence on the well-being and morale of those affected.

All attendees also spoke highly of the treating medical staff. The commitment of family members and the medical team contributes significantly to the well-being of those affected.

The meeting was a complete success. The open atmosphere and exchange were felt to be very helpful.

Our second exchange for those affected and their relatives was held on February 1 in Winterthur.

All attendees emphasized their athleticism and that even with amyloidosis, importance is placed on regular exercise, as far as their condition allows.

There is awareness that a disease like amyloidosis, with its rarity, can lead to cost-intensive therapies, and support for research is necessary wherever possible.

This second meeting of its kind also provided value to all participants and confirmed to us as an association the necessity of such exchanges.

To meet the desire for regional meetings for the exchange of thoughts and information among those affected by amyloidosis, we organized our first member exchange on January 24, 2025, in Olten.

Twelve participants took the opportunity for an intensive and exciting exchange of experiences and information.

This event once again confirmed the relevance and great need for such meetings. It showed how valuable personal exchange is for those affected. This is particularly important considering the fact that patients often don't know any other affected individuals with whom they can exchange experiences.

We see it as our task to continue meeting this need and create platforms that promote exchange and access to information.

Interview with founding member Martin Bürgi