HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) DONOSI NEWSLETTER I OBAVIJEST O OBILJEŽAVANJU SVJETSKOG DANA KRONIČNE LIMFOCITNE LEUKEMIJE (CLL)

Hrvatska udruga leukemija i limfomi (HULL) višegodišnja je članica CLL ADVOCATES NETWORK-a, međunarodne asocijacije koja okuplja udruge pacijenata kao i oboljele od kronične limfocitne leukemije (KLL).

Dana 1. rujna 2021. diljem svijeta obilježit će se Svjetski dan kronične limfocitne leukemije, jedne od hematoloških bolesti a HULL okuplja oboljele od te bolesti, kao i članove njihovih obitelji, skrbnike i prijatelje, te medicinske djelatnike.

Više o svemu možete pročitati u newsletteru.

Dražen Vincek

 

CLL Matters

The CLL Advocates Network´s Newsletter

 

SAVE THE DATE: 1 SEPTEMBER IS WORLD CLL DAY!

On 1st of September the CLL community is launching World CLL Day to give those affected by a diagnosis of CLL a much needed voice, raise awareness and improve understanding of the challenges involved in living with CLL. This is an opportunity to come together and raise awareness about the vulnerability of CLL patients and other immune compromised people during the pandemic.

On this first World CLL Day, we wish to send a message of THANKS to those with healthy immunities for protecting our community. During the COVID-19 pandemic many people experienced isolation, fear and the difficulty of keeping safe – an insight into the life of a CLL patient. The umbrella, a form of shield, is chosen as the central campaign image. You can hold it over someone else, emphasising the aspect of proactive choice to protect.

Please make sure to save 1 September in your calendars!


We will soon share the link to the dedicated Word CLL Day website with plenty of information, downloadable materials and online resources. On that page we will also inform you how you can get involved!

Prior to World CLL Day, we are collecting brief quotes to allow patients and carers express what it´s like to live with CLL in this current pandemic, and upload a picture (optional). These quotes will be shared on the dedicated website and Social Media as part of the campaign communications.

Examples of how the quotes (and pictures) will be used – one example with picture, one without:

     

Please help give patients and carers a voice and allow them to be heard by sharing the following form within your membership: https://www.wclld.org/share-your-voice/
 
Please spread the word and let others stakeholders and your clinical community know about World CLL Day and that materials will follow in due course to enable participation.

World CLL Day is a great way of kicking off Blood Cancer Awareness Month for the CLL community and will help build momentum towards our next major event involving the CLL community on World Leukaemia Day on 4th of Sept and many other activities during the month of September such as World Lymphoma Awareness Day on 15th of September.
 

 

INTERIM RESULTS OF CLLAN´s GLOBAL SURVEY NOW AVAILABLE!

In May, the CLL Advocates Network (CLLAN) launched its global survey to explore CLL support provision & needs worldwide, available resources and unmet needs. The objective of this survey is to systematically capture what is happening "on the ground" and learn what your organisation offers for Chronic Lymphocytic Leukaemia (CLL) patients and the impact of COVID-19 on service delivery in your country.

You can have a "sneak peek" of emerging trends in our interim snapshot. The full data will be available later in the year.

The survey is providing evidence of priorities for support groups and advocates and is helping shape the content for CLL Horizons 2021 (see next article in this newsletter). Survey responses will continue to provide conference content priorities and aid with shaping particular sessions. Besides the above, the results of the survey will be used to build CLLAN´s new Resource Hub, a global directory of CLL support provision and resources that we plan to launch in autumn 2021.

The survey is still open until 1st of August, and there is still time for patient organisations with CLL / SLL in their remit to contribute to this pivotal piece of work and have their voice heard. Our advocacy-facing survey is available in 7 languages and member and non-members can participate at: www.myonlinesurvey.co.uk/CLLAN.

Please don´t miss the opportunity to share best practices and help identify advocacy needs of worldwide organisations providing support to CLL patients.

Participation in this survey will entitle you or any other delegate of your organisation to access this year´s CLL Horizons Conference for free, a bonus usually exclusive to formal members of the CLL Advocates Network only.

The interim snapshot will be followed by a detailed final report that will summarize the findings of the survey and will be presented at CLL Horizons 2021. The final report will highlight areas of good practice that can be celebrated and shared. From the survey findings we will derive strategies, practical recommendations and calls to action, and will submit posters and abstracts of the survey findings to the main scientific conferences.
 

 

REGISTRATION NOW OPEN: CLL HORIZONS 2021, 5-7 NOVEMBER 2021

CLL Horizons, the annual conference of the CLL patient advocacy community, is designed to build capacity in patient advocates and grow their skills on medical and advocacy topics. CLL Horizons 2021 will be held as a fully virtual conference and will take place from 5-7 November 2021.

Registration is now open! Please click here to access the registration page where you will also find information about who is eligible to attend the conference. If you haven´t completed the survey (see article above), please do so to obtain an additional place at our annual conference!

In the CLL Horizons section on our website you will find more detailed information and will be able to access the top-line conference agenda! When shaping the agenda, the CLL Horizons planning committee has taken into consideration the feedback gathered from the participants of the previous Horizons conference. Early snapshot results from CLLAN´s 2021 “Global CLL resource mapping & unmet needs survey” (see above) have further helped shape the content for this year´s conference. The survey was launched in May 2021 and is still running until end-July 2021. With that, CLL Horizons 2021 will not just be “another conference” but will be evidencing the real time unmet needs of CLL patient groups and CLL support provision worldwide and thus become an offering that is representative of the needs collected on the ground and the priorities identified in the survey.

Please note that select sessions will be duplicated to allow participation of attendees joining from the southern hemisphere!

Please keep an eye on the news section of our website and watch out for any updates on CLL Horizons.

 

CAPACITY BUILDING: CLLAN´S LATEST WEBINAR ON "HOW TO SUSTAINABLY BUILD AND DEVELOP A PATIENT GROUP"

The CLL Advocates Network hosted this webinar to empower patient advocates and leaders of new and established patient groups of lessons learned by the panel during the forming of their organisations, the early years, and service delivery today. The video recording and the slides of this 30th June 2021 webinar are now available for download.

The webinar started with three short presentations to share individual support experience, achievements and working processes that set the scene ahead of the moderated Q&A discussion. The session explored organisational and service delivery priorities, sustainability, good practice and moving to the next level.
A key observation of the webinar was that it identified the impact of the pandemic and good practice strategies when focusing service delivery priorities. An issue identified was succession planning and the need of considering capacity due to inherent health issues in patient-led organisations. 

Click here to access the recording and the slide-deck of this last webinar.
Click
here to access previous webinars.

 
 

NOT YET A CLLAN MEMBER?

Become a member and benefit from the many benefits! Please refer to our website to learn more about the types of members and member rights.

In this moment in time when charities and patient organisations are challenged by reduced fund raising and other needs, it´s a priority to come together aid each other, and learn from each other. So please become a member of the CLL Advocates Network, engage with CLL community leaders from across the world, and share your challenges and good practices.

We look forward to receiving your member application and welcoming you to our network!

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