Brittle Bone Society (BBS) Westminster Parliament reception event (OI Awareness)
13th June 2023 at Westminster, House of Commons, London 2 to 4 pm
The BBS have secured sponsorship from the local constituency MP Chris Law to support this event at the Parliament. The initial project commenced 1 year ago; seeking greater awareness of OI and calling for the month of May to be recognized. Generally supporting the needs of the OI community. We encouraged our members to write to their elected representatives to bring their attention to the OI community. At this planned event we will also be presenting the results of our patient charter highlighting the shortfalls in patient care. We are also grateful that Mr Law raised an early day motion in parliament to call for greater awareness and a month of focus on OI.
Please contact your MP about the event
We ask members to get in touch with their elected reps and make them aware of the event and encourage them to attend. The host MP Mr Chris Law will also seek to foster support from (the house) elected members to attend.
OI army of ambassadors
All the individuals and their close relatives involved in ‘the BBS year long campaign’ and who feature on our literature about it will be invited to attend. Shani Dhanda, Monique Jarrett, Yvonne Grant, Eva Kelly and her mum Silean, Lucy MacConnell and her mum Dr. Niamh MacConnell, Kieran Dube and mum Rachel Dube, Kat Watkins, Max Edney and dad Steve Edney, Richard Toner, Amna Hammad and more!!!
Other OI ambassadors who have helped us in other campaigns and given talks and presentations representing the Charity will be invited and will include representatives of the Charity’s Trustee board, BBS medical advisory board and scientific advisory board representation. Key BBS supporters, healthcare professionals either involved or interested in our work and other NHS personnel and sponsors. Various funders will be invited to attend. Friends from the wider rare bone disease network. E.g. HPP, XLH, Fibrous Dysplasia. The aim is to raise awareness of OI and foster greater support for care in rare bone.
We have an impressive line up of speakers Host MP Mr Chris Law, The Lord Kevin Shinkwin, CEO Patricia Osborne, Vice Chairman and Trustee Mr John Phillips, Professor Richard Keen – Chairman of our Scientific Advisory Board, Dr Judith Bubbear (standing in for Chair of our MAB, Assoc. Prof Kassim Javaid) and Steve Edney (dad to Max, advocate of OI and champion fundraiser for the BBS).
Whats on the Agenda
Welcome address from MP about the charity’s standing in the community and hopes to raise more awareness. (with input about the UK Rare Disease Plan).
We will address our important work to develop care pathways referencing to any network care work BBS have contributed to. We will reference any published papers we have achieved eg. Impact of Covid on the OI community and provide an update on any new treatments/exciting prospects including research in OI care. There will also be a talk from Steve Edney on his, and his family’s own OI Journey.
Sign the BBS Charter
There is still time to sign the #OICANMayCampaign charter! You can sign the charter here.