Newsletter Issue 1Spring 2015

Welcome to the first edition of our newsletter! We’ll try and keep you informed of the Group activities,and update you with the latest news from our clinical members.

Our second meeting was held on January 20th, at theFleming Park Bowling Club ,and was well supported, withabout 50 attendees. We learned what ILD is, and split intotwo groups in separate rooms (the ‘Cracklers’ and theirSupporters) for a free discussion time, which was felt to be

useful for both groups .After tea and cakes, we had a very interesting talk on travelling with ILD - madeall the more interesting by the input of an intrepid patient/traveller ! It’s good to get the input of thosewith hands on experience...

Kate Sonpal, from the biomedical Research and WILD team told us about patient & public involvementin research and raising awareness.We completed the afternoon with a discussion on the way forward for WILD , registering as a charity,fund-raising, awareness raising etc - watch this space!

We had plenty of time to ‘mingle’ and talk with patients, carers, clinicians and MPs from all over thecountry; we had an inspirational talk from a patient, and heard from Alex Cunningham MP. It all addsto raising the awareness of IPF amongst MPs (Although we may have to start on another cohort afterMay’s elections......)

WILD goes to Westminster!February 25th 2015

And here we are, at the launch of the BLF’s new report on IPF

Our next meeting will be on Tuesday May 12th, 1pm - 4pmat the same venue in Kornwestheim Way, Eastleigh (behind theHoliday Inn, Passfield Avenue, SO50 9NL). The theme for thismeeting will be ‘Staying active with ILD’, there will be a newsround-up, relevant presentations and discussions, lots of timefor tea (and cake) and a chat.

Breaking news:-

· Pulmonary rehab is now available for all IPF patients in the Southampton city area (postcodesSO14-19)

· The BLF have launched a virtual ILD campaign, we are linked into this and our opinions havebeen sought

· Nintedanib is licensed in Europe which means the new patients will no longer be able to havethe drug from 01/04/15, but it is over a year from NICE approval - this means a gap in provision fornew patients

Hope you can make it to the next meeting!