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6 hours ago
CLL Ireland

On Rare Disease Day we call for action for people living with a rare disease to have equal opportunities to realise their full participation in family, work, and social life.
Though lymphoma is the most commonly occurring blood cancer and the third most common childhood cancer, it is still considered a rare disease. There are over 80 subtypes of lymphoma, each with its own unique characteristics, treatment options, and prevalence rate. Some subtypes are more common than others, and some are extremely rare.

One main challenge someone affected by a rare lymphoma might experience is that there are fewer standard treatment options for rarer lymphomas. This means they can be difficult to treat or diagnose. It is critical that patients be informed about their subtype so they can better understand their diagnosis and treatment options and more effectively source relevant, case-appropriate information.
Lymphoma Coalition believes that access to life-saving #cancer diagnosis, treatment and care should be equitable for all – no matter where you live, your income, your ethnicity or gender.

To learn more about visit: www.rarediseaseday.org/
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6 hours ago
CLL Ireland

Today is Rare Disease Day! Join us in raising awareness for those battling uncommon illnesses.

Did you know that Chronic Lymphocytic Leukemia (#CLL) is considered a rare disease? Despite its rarity, CLL is the most common leukemia impacting people worldwide.

🔬 Understanding CLL:
CLL is a type of blood cancer that affects the blood and bone marrow causing an overproduction of abnormal white cells. It is classified as a rare disease while still the most common leukemia.

🌍 Connecting Rare Diseases:
On this Rare Disease Day, let's recognise the challenges faced by individuals living with CLL and other rare conditions. Many rare diseases share similarities in terms of limited treatment options, lack of awareness about the disease and availability of information and support for patients.

Let's stand together in solidarity with those battling rare diseases!

#RareDiseaseDay #CLL #RaiseAwareness
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6 days ago
CLL Ireland

Lymphoma Coalition recently presented a poster at #CART24 “An Assessment Side-Effect Incidence for those Receiving CAR-T Versus Other Treatments in the Setting of Relapsed or Refractory Disease”

You can read it and the rest of LC’s research here: lymphomacoalition.org/lymphoma-coalition-research/
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4 weeks ago
CLL Ireland

We need your help?

Please take the time to fill in this Global Patient Survey from Lymphoma Coalition.

CLL Ireland are proud members of Lymphoma Coalition and if we get more than 100 Irish patients and care partners to participate we will receive a country specific report.

Also the voice of our community will be heard on global platforms.

This helps to drive change to improve access to care and better treatments.

The results will also help with our evidence based advocacy.

Why do we do this research?
Lymphoma Coalition is committed to bringing equity in lymphoma outcomes across borders. To do this, we must accurately represent the current voices and values of patients and their caregivers. This is especially important when we work with healthcare professionals, researchers, industry and others to improve care. This knowledge is gathered through the Global Patient Survey (GPS). In addition, the results of past surveys have been used to inform published research papers, conference presentations and posters, patient resources, education materials and lymphoma awareness campaigns. The results of the GPS are shared in a Global Report, as well as regional and country reports. It is through partnership with our member organisations that we can successfully gather the experiences and insights of patients and caregivers around the world.

Irish Cancer Society
Cork ARC Cancer Support House
Breakthrough Cancer Research
Jan Rynne Fionnuala Clifton

picker.fra1.qualtrics.com/jfe/form/SV_eScMGEAxzLtzgkC
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We need your help?
Please take the time to fill in this Global Patient Survey from Lymphoma Coalition.
CLL Ireland are proud members of Lymphoma Coalition and if we  get more than 100 Irish patients and care partners to participate we will receive a country specific report.
Also the voice of our community will be heard on global platforms.
This helps to drive change to improve access to care and better treatments.
The results will also help with our evidence based advocacy.
Why do we do this research?
Lymphoma Coalition is committed to bringing equity in lymphoma outcomes across borders. To do this, we must accurately represent the current voices and values of patients and their caregivers. This is especially important when we work with healthcare professionals, researchers, industry and others to improve care. This knowledge is gathered through the Global Patient Survey (GPS). In addition, the results of past surveys have been used to inform published research papers, conference presentations and posters, patient resources, education materials and lymphoma awareness campaigns. The results of the GPS are shared in a Global Report, as well as regional and country reports. It is through partnership with our member organisations that we can successfully gather the experiences and insights of patients and caregivers around the world.
Irish Cancer Society 
Cork ARC Cancer Support House 
Breakthrough Cancer Research 
Jan Rynne Fionnuala Clifton 
https://picker.fra1.qualtrics.com/jfe/form/SV_eScMGEAxzLtzgkC
2 months ago
CLL Ireland

A Trial of Pirtobrutinib (LOXO-305) Plus Venetoclax and Rituximab (PVR) Versus Venetoclax and Rituximab (VR) in Previously Treated Chronic Lymphocytic Leukemia/​Small Lymphocytic Lymphoma (CLL/​SLL) (BRUIN CLL-322)
clinicaltrials.gov/study/NCT04965493
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A Trial of Pirtobrutinib (LOXO-305) Plus Venetoclax and Rituximab (PVR) Versus Venetoclax and Rituximab (VR) in Previously Treated Chronic Lymphocytic Leukemia/​Small Lymphocytic Lymphoma (CLL/​SLL) (BRUIN CLL-322)
https://clinicaltrials.gov/study/NCT04965493
2 months ago
CLL Ireland

Happy New Year to all in our community and beyond.

As we embark on a new year, the team at CLL Ireland extends heartfelt wishes for a year filled with hope, healing, and moments of joy for you and your loved ones. As we look back on the past year, we are grateful for the unwavering support and camaraderie within our incredible community.

2023 has been a year of resilience, advocacy, and progress for CLL Ireland, and we are thrilled to share some of the impactful moments and initiatives that have shaped our journey

eepurl.com/iG0AU2
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Happy New Year to all in our community and beyond.
As we embark on a new year, the team at CLL Ireland extends heartfelt wishes for a year filled with hope, healing, and moments of joy for you and your loved ones. As we look back on the past year, we are grateful for the unwavering support and camaraderie within our incredible community.
2023 has been a year of resilience, advocacy, and progress for CLL Ireland, and we are thrilled to share some of the impactful moments and initiatives that have shaped our journey
http://eepurl.com/iG0AU2
2 months ago
CLL Ireland

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