Important message to Patient Organisations

 

Over many years, many Patient Organizations (POs) have met with members of the American College of Rheumatology (ACR) to discuss increased PO participation at annual scientific meetings, however to date little has been accomplished to implement change. Recently, other issues involving PO conference registration and membership status have been brought to the ACR’s attention and, as a result, the door to discuss the potential for increased PO has reopened.

The contribution of POs to the rheumatology landscape over the last several decades has evolved, and what each group brings to the table can vary. Therefore, to fully capture the depth of value POs can contribute, the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)* is uniting POs and allied collaboration groups who are interested in sharing their thoughts and perspectives on this matter. Given the ACR is undergoing a process to reimagine the landscape of future Convergence meetings, it seems the time is finally right to proceed!

If you are affiliated with a PO – or an allied research collaborator (research organization or institute, databank, or government) would like to be part of these conversations, please complete this form by December 15th, 2021.

This form is not for individual patient sign on. Another letter will be distributed in January 2022 for patients with rheumatic conditions who would like to support heightened PO presence, and in turn, greater patient representation, at future Convergence meetings.

If you have any questions about this initiative, please contact Tiffany Westrich-Robertson, CEO, AiArthritis at tiffany@aiarthritis.org.

 

*The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) recognizes and greatly appreciates the persistency of those organizations and individuals who, over many years, have started conversations with the ACR regarding increased inclusion and participation at annual scientific meetings. As a patient-led, international organization in the rheumatology space whose mission is to help unite patient voices with other stakeholders to solve problems together, we have offered to facilitate and manage this effort.

 

Direct link to form: https://forms.gle/MJv1J4KVGwPByV318

To tag AiArthritis in social media posts: @IFAiArthritis

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