The 2nd European Meeting for ATTR Amyloidosis for Doctors and Patients took place in Berlin, Germany. In attendance were 300 participants, including over 200 doctors from 21 countries across the globe. Patients and caregivers came from Japan, South Korea, Venezuela, Netherlands, England, Germany, Argentina, Austria, Brazil, Canada, Columbia, France, Israel, Italy, Macedonia, Mexico, Portugal, Spain, Sweden and the United States. Despite the long journey to get there, we felt very honoured and blessed to be able to attend. It was wonderful to meet face to face with some of the patients that I had “met” through social media forums.
Organized by the Amyloidosis Alliance, this biennial conference aims to bring doctors and patients together to exchange needs, experiences and knowledge of ATTR amyloidosis. In addition to presentations on diagnosis, disease awareness, research updates, drugs under development and issues of patient care, Alliance-initiated international task forces report back on progress of their initiatives, such as a listing of all medications available and accessible by country and a registry of all Centres of Amyloidosis Expertise (first in Europe and around the world).
The conference was three days long with many thought-provoking speakers. A complete recording of the conference can be found HERE.
It was a revelation to hear from specialists themselves that they are not always so sure about when to treat, when to change therapies and when to stop treatment for amyloidosis, and that many factors must be weighed – and this is for the patients who have already received a diagnosis. A greater and more urgent need is educating GPs and family doctors to consider testing for the disease at all when symptoms are suggestive. In the Netherlands, a pilot study using an “Electronic Health Record Algorithm & Best Practice Alert” to identify patients with systemic amyloidosis found that most GPs did NOT refer for testing, even though the system displayed a diagnostic alert for amyloidosison their computer! Clearly, amyloidosis awareness is lacking not only with the general public but also with the healthcare community.
In Canada, amyloidosis is touched on when doctors are in training only a quick overview of the disease. Perhaps we could suggest patient and or caregiver speakers at the university medical schools to underscore the importance of earlier diagnosis.
One key message we took away from the conference is the continued need to educate and advocate, at every level, to create an awareness of this monster that is amyloidosis.
Advocacy and awareness will be a key focus of Hereditary Amyloidosis Canada’s activities for the upcoming year. Your participation can help ensure that the hATTR community’s voice is heard and its needs are met. Please sign up on our website to receive important updates, Canadian-focused news and information on our advocacy efforts and how you can become involved, or connect with us at firstname.lastname@example.org.
ANNE MARIE CARR