Empowerment

New survey on the indirect costs of IBD. The aim of the study is to assess the influence of IBD on the patients productivity at work and relevant costs for society. www.ibdcosts.eu Within the framework of World IBD Day 2019 the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) is supporting a new study which aims to assess the indirect or invisible costs of Crohn’s disease and ulcerative colitis, collectively known as Inflammatory Bowel Disease (IBD).

There are some topics that are hard to discuss, for which people may not want to share their opinions.  Surgery in people with Inflammatory Bowel Disease (IBD) is one of these neglected topics. It is, however, extremely relevant and important to collect information about the perception of surgery, the impact on the quality of life, and worries about it.

The results of this important survey have now been published in the in the Colorectal Disease Journal.

EUnetHTA deems patient involvement very important in the production of Joint Assessment reports. We recognise that patients and those who support them have unique knowledge about what it is like to live with a specific disease or medical condition. We believe patient groups can help us understand patients’ unique perspectives by collecting and presenting patients’ and carers/care-givers’ views and experiences by engaging with a wide range of patients.

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The pharmaceutical company, Pfizer, has launched a call for proposal within the framework of the "Independent Grants for Learning & Change".

The call is for proposals on "Appropriate Immunisations in Adult Patients with Immune-Mediated Inflammatory Conditions".

Follow the link for more informatio:  https://www.pfizer.com/sites/default/files/rfp_files/IGLC_RFP_2018RA2_Im...

"Considering whether to have ileal pouch surgery" is a booklet for ulcerative colitis patients which was recently made in a joint effort between Dr Andrew McCombie, Crohn ́s and Colitis New Zealand (patient with an ileal pouch), Associate Professor Tim Eglinton (Colorectal Surgeon), and Professor Richard Gearry (Gastroenterologist). It is designed to help ulcerative colitis patients better understand and answer these questions on surgically removing their colon (called a “colectomy”).

"Considering whether to have ileal pouch surgery" is the title of a booklet for ulcerative colitis patients that was recently made in a joint effort between Andrew MacCombie from Crohn´s and Colitis New Zealand (and patient with an ileal pouch), Associate Professor Tim Eglinton (Colorectal Surgeon), and Professor Richard Gearry (Gastroenterologist). It is designed to help ulcerative colitis patients better understand and answer questions concerning surgically removing their colon (called a “colectomy”).

The report from the ¨Optimal nutritional care for all¨conference is now available for download. The conference was organised by the European Nutrition for Health Alliance’s (ENHA) Optimal nutritional care for all (ONCA) campaign, the Patients Network for Medical Research and Health (EGAN) together with the European Patients Forum (EPF) and the Platform Patients and Food Netherlands , organized a conference for EU patients’ groups to discuss the topic of nutrition.