Daily Life | Disability | Events | IBD | Information | Ostomy
In what seems like a blur, Digestive Disease Week (DDW) 2024 has come to a close.
Alicia and Manda are pictured with representatives from the The Leona M. and Harry B. Helmsley Charitable Trust.
While President, Alicia and Director of Development, Manda were rushing around to meet with other advocates, chat with sponsors, find new IBD products, and learn about advances in the field – there seemed to be a defining theme: the patient’s voice.
A photo of the panel speaking at the “Bridging the Communication Gap for Better IBD Care: A Collaborative Approach” event.
For the first time in a long time, it felt like the patient’s voice was illuminated more than it has been in the past — which is a positive insight and makes the future feel more hopeful overall for individuals living with digestive diseases!
An event that Alicia and Manda were privileged and excited to attend was Bridging the Communication Gap for Better IBD Care: A Collaborative Approach. In this alliance – Monday Night IBD, Color Of Gastrointestinal Illness (COGI), IBD Moms, and Connecting to Cure, and South Asian IBD Alliance(SAIA) presented two panels featuring medical providers and patients discussing gaps and missed opportunities to improve patients’ care moderated by Dr. Neilanjan Nandi and Dr. Aline Charabaty.
Alicia & Victor Chedid stand in front of the poster “Uncovering Unique Needs and Barriers to Care Among LGBTQ+ Patients with IBD…”
Amongst the displays and posters in the exhibit hall, they had to make a stop by a poster presenting results from a study in collaboration between Girls With Guts, Mayo Clinic Minnesota, and PRIME Education titled: Uncovering Unique Needs and Barriers to Care Among LGBTQ+ Patients with IBD: Insights From a Community Survey to Inform Inclusive Practices.
Alicia Aiello and Victor Chedid worked with their teams to uncover gaps and limitations LGBTQ+ patients experienced throughout their IBD care journey and what barriers existed in allowing them the most cohesive relationship with their practitioners. The data was astounding and offers insight to some of the work to continue to be done!
And lastly, Alicia and Manda took to the exhibit hall and saw a wide range of new innovative technologies and medications available. It is inspiring and overwhelming to witness the sheer amount of research and updates given during DDW, but some other interesting findings were:
Manda & Alicia standing with representatives from SAIA– President, Tina Aswani-Omprakash & Patient Advocate, Basmah Ali!
DDW is a heartfelt reminder that GWG and other orgs in the space all have the same goal – to improve the lives of those with IBDand/or ostomates.
In conversations with other patient advocates, medical providers, and our sponsors – GWG is grateful for the connections they have, as well as a clear path towards the current and potential work to be done!
