A New Patient Alliance - ODLC
EGFR Positive UK is delighted to announce that on 1st July 2022 we formalised our collaboration with ALK Positive UK and Ros1ders by creating an umbrella organization - The Oncogene-Driven Lung Cancer Patient Alliance.
We have worked closely with the ALK+ charity and the ROS1 support group for some time and whilst many matters are specific to each mutation, there are other areas where we have common interests - early diagnosis, screening, radiotherapy, chemotherapy, brain mets, driving and charity administration.
The newly formed Alliance will optimize resources and influence by:
sharing best practice
optimising resources
delivering joint projects
co-ordinating events/activities
supporting the formation of new patient support groups for all actionable mutations
The umbrella organisation will represent Charities’ supporting patients with actionable mutations and advocate on behalf of all oncogene-driven lung cancer patients in the UK. This will give us greater influence when dealing with pharmaceutical and national organisations.
It is paramount that the independence of each Charity is maintained and we will continue to focus on the key objectives of support, empowerment, and advocacy for our EGFR positive members
In time and as treatments are found for other mutations, it is likely that more patient support groups will be formed and they will be supported and invited to join the Alliance.
We consulted five leading EGFR experts, including our honorary advisor Dr Riyaz Shah, about this proposal and they all gave their unqualified support, whilst emphasising the need to maintain the independence of each individual Charity.
Dr Riyaz Shah: ‘The Oncogene-Driven Lung Cancer Patient Alliance is an excellent initiative with the potential to support existing and new patients as they navigate complex pathways within these rare subtypes. Patient empowerment remains key to driving up standards. I wish them every success and aim to support as best I can.’
Prof Sanjay Popat: ‘I think an alliance makes perfect sense. Many of each group’s aims and objectives are the same and certainly overlap.’
Dr Alastair Greystoke: These support groups have provided invaluable aid for some of my patients newly diagnosed with these rare forms of lung cancer. This Alliance will raise their profile with medical and nursing professionals and strengthen their emerging role as advocates for access to new treatments both in funding applications to NICE and fostering UK based research.
Dr Shobhit Baijal : ‘Personalised treatment and precision Oncology is key to improving cancer patient outcomes. The New Oncogene-Driven Lung Cancer Patient Alliance (UK) will be pivotal for putting the needs of the patients at the forefront of treatment decision making’
Dr Tom Newson-Davies: ‘I welcome this Alliance, bringing together the power and drive of patient advocates. It has great potential to improve the care and treatment of patients with oncogene drive lung cancers across the UK’
For further information email contact@odlcpatientalliance.co.uk or visit our website: https://www.odlcpatientalliance.co.uk/