One of the first supporters of the Alström Initiative was the organization ASUK – Alström Syndrome UK.
ASUK was founded by parents in 1998 when their children were diagnosed with Alstrom, at this time no information about the disease was available.
This resulted in one of the world's largest and most developed organizations for Alström, which cares for the disease and those affected. https://www.alstrom.org.uk/
In addition to building structures and networks, ASUK has also succeeded in establishing specific patient care and highly specialized clinics with Birmingham Women's and Children's Hospital and the Queen Elizabeth Hospital, Birmingham.
ASUK has also set up an international patient registry together with Sanford University. Such registries are – especially for such rare diseases with a small national number of cases – literally 'vital' in order to provide sufficient data for research. Patient Registry – Alstrom Syndrome.
The importance of data will always be an issue for this initiative. Both in terms of the potential for early detection and research, as well as the importance of a regulatory framework for the national and international use of data ('data governance').
On 3-4 December 2021, the annual Alström Conference will take place under the leadership of ASUK. Affected people from over 16 countries are taking part in this virtual conference. https://www.alstrom.org.uk/as-global/#AS-Global-Conference-2021
We are particularly proud to work together with ASUK on a 'pilot day' for the concept of the 'Center of Excellence' in Germany (planned for 2022).
What this Center of Excellence is, you will find out in the next days at this point!
The performance of ASUK and its willingness to support the Alström initiative give hope to take a further step together for all those affected.
# BECAUSE WE CAN
From now on, the Alstrom initiative is also available on LinkedIn - Just follow it!
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