تغيير التصورات عن سرطان الرئة.
مرحبًا بكم في ALK POSITIVE UK
مؤسسة خيرية مسجلة يؤسسها المرضى وذويهم وأصدقائهم.
سرطان الرئة الإيجابي ALK هو شكل نادر نسبيًا من سرطان الرئة ناجم عن إعادة ترتيب غير طبيعية لجين سرطان الغدد الليمفاوية الكشمي. ال الغالبية العظمى من المرضى من غير المدخنين ، نصفهم أقل من 50 عامًا ، وبعضهم أصغر بكثير ، ومعظمهم من الإناث. تأسست عام 2018 ، أغراضنا هي:
We want everyone in the UK who is diagnosed with ALK-positive lung cancer:
To receive the best care possible
To live their best lives possible
To live for as long as possible
We provide a platform where patients and their families can exchange information about their diagnosis and treatment, and where they can give and receive mutual support.
We are a source of information for patients so that they are better informed about their condition and, as informed patients, they are empowered to ensure that their health care providers employ best practice.
We advocate on behalf of ALK-positive patients to ensure that they receive a high level of care wherever they live in the UK.
We are recognised by NICE (National Institute for Health and Care Excellence) as an organisation to be consulted on new ALK-positive treatments. We work collaboratively with other relevant organisations and have undertaken several joint projects. We attend conferences of lung cancer oncologists and nurses where we promote the services that we can offer their patients.
After 18 months of asking, I finally got a brain scan, thanks to the information I learnt on this site. My ONC nurse told me the last time that I spoke to her that she would be led by me as I know more about ALK+ than she does. This is all because of the work that has been done by this Charity.
We found today’s meeting to be really useful in exploring your already extremely helpful written submission in more depth and helped us unearth issues that were either new or not completely understood such as the real meaning and consequences of certain side-effects. Your insight was particularly helpful as you were able to speak from a personal point of view as well as the wider perspective.
My husband's oncologist told him that she was on a Zoom conference with our Chair, Debra. She was very impressed and said that Debra's words had given her hope and had really impressed her.