Cll Ireland Is a Patient-Led Advocacy Group.
Our goal, is to ensure that anyone affected by Chronic Lymphocytic Leukaemia (CLL) can gain access to the information, advice and support they need when they need it!
Important Information
Latest News
The Lymphoma Coalition Global Survey results are out and Ireland just received the Country Specific Report.
One of the questions Irish lymphoma and CLL patients were asked.....
Have you had the Shingrix vaccine (For Shingles)?
- Only 18% of respondents have received the Shingrix vaccine in Ireland
- 1 in 3 (33%) have never even heard of the Shingrix vaccine
- 21% say they cannot get it due to financial barriers as the vaccine costs approximately €500, despite being medically recommended for people with CLL and lymphoma
- Shingrix is available free of charge in Northern Ireland for eligible patients, creating a clear North/South access gap
- 14% plan to get it but have not yet done so
- Just 10% do not want the vaccine
- 4% are unsure
- Key finding: Cost is the single biggest barrier after lack of awareness, many patients who need this vital protection cannot afford it.
Shingrix is strongly advised for those living with CLL and lymphoma due to weakened immune systems. It is unacceptable that cost prevents so many from accessing it, while it is free in Northern Ireland. We are calling for equal, free access across the island for all immunocompromised patients.
CLL Ireland is calling on our Government to fund the Shingles vaccine as a matter of urgency to protect our patients and we are also concerned that there is no national information campaign on Shingles.
Irish Cancer Society
HSE Ireland
Jan Rynne
Michael Rynne
#BloodCancerAwarenessMonth
#CLL #patientadvocacy
#oneeuropeequalcare
#eclla
#lymphoma
This content isn't available at the moment
When this happens, it's usually because the owner only shared it with a small group of people, changed who can see it, or it's been deleted.
This content isn't available at the moment
When this happens, it's usually because the owner only shared it with a small group of people, changed who can see it, or it's been deleted.
This content isn't available at the moment
When this happens, it's usually because the owner only shared it with a small group of people, changed who can see it, or it's been deleted. CAR T-cell therapy: Ireland needs better access
Cork country singer and patient advocate Mags McCarthy recently spoke with Cork’s 96FM about her campaign to establish a CAR T-cell therapy centre at Cork University Hospital (CUH).
This is an incredibly important campaign for our blood cancer communities. CAR T-cell therapy has transformed treatment for some blood cancers, and its use is now expanding into other areas, including autoimmune diseases.
Mags was joined in the interview by Professor Bruce Levine, a world-renowned expert in cancer gene therapy and one of the pioneers of CAR T-cell therapy. His groundbreaking work helped bring the first FDA-approved CAR T-cell therapy to patients.
Ireland has limited access to CAR T-cell centres compared with many other European countries. This can have a major impact not only on patients who may benefit from these therapies, but also on Ireland’s ability to participate in cutting-edge clinical trials.
CLL Ireland fully supports Mags McCarthy’s campaign.
We are delighted to be attending the meeting organised by Mags in Dáil Éireann on October 7th, where this important issue will be highlighted to TDs and Senators.
For people living with blood cancers, access to the most advanced treatments should not depend on where they live in Ireland.
Cork needs a CAR T-cell centre. Ireland needs greater access to cell and gene therapies. And our patients deserve the opportunity to benefit from the very best treatments and clinical research available.
We are proud to stand alongside Mags and the patient community in calling for change.
#CLLIreland #CART #CARTCellTherapy #BloodCancer #Leukaemia #Lymphoma #PatientAdvocacy #Cork #CUH #CancerResearch #CellTherapy #GeneTherapy #ClinicalTrials #Ireland
This content isn't available at the moment
When this happens, it's usually because the owner only shared it with a small group of people, changed who can see it, or it's been deleted.
This content isn't available at the moment
When this happens, it's usually because the owner only shared it with a small group of people, changed who can see it, or it's been deleted.
Ireland needs similar action👇
Australia’s Blood Cancer Taskforce has today released five new “optimal care pathways” (OCPs) aimed at improving treatment consistency and reducing avoidable deaths from blood cancer.
@DonnellyStephen
https://www.petermac.org/about-us/news-and-events/news/details/new-guides-to-reduce-avoidable-deaths-from-blood-cancer
The Lymphoma Coalition Global Survey results are out and Ireland just received the Country Specific Report.
One of the questions Irish lymphoma and CLL patients were asked.....
Have you had the Shingrix vaccine (For Shingles)?
- Only 18% of respondents have received the Shingrix vaccine in Ireland
- 1 in 3 (33%) have never even heard of the Shingrix vaccine
- 21% say they cannot get it due to financial barriers as the vaccine costs approximately €500, despite being medically recommended for people with CLL and lymphoma
- Shingrix is available free of charge in Northern Ireland for eligible patients, creating a clear North/South access gap
- 14% plan to get it but have not yet done so
- Just 10% do not want the vaccine
- 4% are unsure
- Key finding: Cost is the single biggest barrier after lack of awareness, many patients who need this vital protection cannot afford it.
Shingrix is strongly advised for those living with CLL and lymphoma due to weakened immune systems. It is unacceptable that cost prevents so many from accessing it, while it is free in Northern Ireland. We are calling for equal, free access across the island for all immunocompromised patients.
CLL Ireland is calling on our Government to fund the Shingles vaccine as a matter of urgency to protect our patients and we are also concerned that there is no national information campaign on Shingles.
Irish Cancer Society
HSE Ireland
Jan Rynne
Michael Rynne
#BloodCancerAwarenessMonth
#CLL #patientadvocacy
#oneeuropeequalcare
#eclla
#lymphoma
This content isn't available at the moment
When this happens, it's usually because the owner only shared it with a small group of people, changed who can see it, or it's been deleted. Ireland needs similar action👇
Australia’s Blood Cancer Taskforce has today released five new “optimal care pathways” (OCPs) aimed at improving treatment consistency and reducing avoidable deaths from blood cancer.
@DonnellyStephen
https://www.petermac.org/about-us/news-and-events/news/details/new-guides-to-reduce-avoidable-deaths-from-blood-cancer
Looking for more information about CLL?
We’ve produced a handy booklet explaining all about CLL. We cover such topics as:
- What is CLL?
- Signs & Symptoms of CLL
- Staging
- Treating CLL
- Complications of CLL
- Living with CLL
- Talking about CLL
and much more! Click on the button below to open the file – it’s a great resource and we’re delighted to share it with you!