September 15th Is World Lymphoma Awareness Day
Did you know that lymphoma has more than 60 subtypes and that treatments and outcomes vary wildly?
This year on World Lymphoma Awareness Day, we encouraged patients, caregivers, the healthcare community, and the general public to insist on subtype-specific identification when talking about lymphoma.
More than 1,000,000 people around the world live with lymphoma and 1,000 are diagnosed every day yet many patient organisations report patients are not told their subtype when they are first diagnosed.
This year, Lymphoma Coalition launched the Know Your Subtype campaign to:
- Empower Patients: So they can receive the best treatment and specific support services
- Encourage Subtype Reporting: For better understanding of the unmet needs of the patient
- Bring About Global Impact: By initiating systemic change for naming and listing lymphomas
WLAD in Europe
What did LC Members do globally for WLAD?
Here are some examples of what our members did globally to help spread awareness about lymphomas.
Blodcancerförbundet - Sweden
On World Lymphoma Awareness Day, The Swedish Blood Cancer Association has invited politicians and important decision-makers within the Swedish health care system to a closed ”roundtable discussion” in Stockholm. The main purpose of the discussion is to talk about how they together can help create the ”lymphoma care of the future” in Sweden. Their aim with the meeting is to improve lymphoma patients’ access to Swedish health care in general, as well as access to the latest lymphoma treatments.
Lymphoma Research Foundation - USA
Buildings and landmarks across the globe were lit red on September 15 in honor of World Lymphoma Awareness Day and as part of the Foundation’s Light it Red for Lymphoma initiative. There were more than 50 buildings lighting including One World Trade Center (New York, NY), Taipei 101 (Taipei, Taiwan), CN Tower (Toronto, Ontario) and much more.
A full list of Lighting partners are available on the Foundation’s official Light it Red for Lymphoma landing page at lymphoma.org/LightItRed.
Find out more here.
OHLB Kraujas - Lithuania
Ambassadors of courage:
The stories of lymphoma survivors were prepared and published in the media (online,radio and TV). Stories include comments of medical specialists about innovations in lymphoma treatment and personal experiences from the patients.
Kraujas is also providing a special information kit for patients that includes disease and treatment information, material about psychological support, nutrition, physical activity, etc. The information kit is given for all newly diagnosed lymphoma patients.
LIPA - Serbia
LIPA hosted an education session for patients with lymphoma on September 15 in Belgrade to discuss experiences, side effect management, and therapy options.
LIPA also raised awareness in the general public though their "don't let your nodes tie you into a knot" knot tying competition, "Lymphorm yourself" video campaign, and "know your subtype" quiz competition.
Lymfklierkanker Vereniging Vlaanderen - Belgium
On the 15th of September, the Lymfklierkanker Vereniging Vlaanderen vzw (LVV) spread the Lymphoma Coalition Europe (LCE) "Know your subtype" video among doctors, nurses and patients in all the hospitals located in the Belgian Flanders.
In occasion of its annual symposium about Lymphoma, LVV drew the attention of participators to the need to know their subtype by showing the LCE video.
France Lymphome Espoir
France Lymphome Espoir (FLE) is celebrating its 10th birthday this year. Up until WLAD on September 15th, the organisation asked patients, family members, and anybody else to share the most beautiful things they've done during the past 10 years, posting pictures of their hands with a short message directly on FLE Facebook wall and on other social networks with the hashtag #FLE10ans.
In addition to that, FLE organised a nationwide media campaign (televisions, social networks, web, radios and movie theatres) focused on “It’s amazing what you can live in a decade”. Three videos with three public figures talking about lymphoma in a both serious and humorous way were also launched in occasion of WLAD. Last but not least, local events took place in hospitals to be close to patients, and several hikes were organised around France.
Lymphoma Association UK
The Lymphoma Association organised a call on NHS England to carry out a lymphoma audit, they launched a Thunderclap https://www.thunderclap.it/projects/46221-typesmatter and a government petition as part of this.
They also launched a ‘What’s your type?’ survey on September 12th too, aimed at people with lymphoma, to help them understand their experiences and knowledge of their subtype.
The Lymphoma Association also hosted an event in London for patients and clinicians on 15 September at the Royal Society of Medicine https://www.rsm.ac.uk/events/events-listing/2015-2016/groups/public-engagement-programme/mmg06-medicine-and-me-living-with-lymphoma.aspx
AEAL - Spain
If we are so demanding for certain things in our lives without apparent importance, such as order a coffee in a bar, how is it possible that many lymphoma patients do not know the exact name of their disease?
With this pretext, AEAL is launched an awareness campaign under the slogan: "Call things by their name". Using the comparison between the various types of coffee, AEAL wants to warn about the diversity of lymphomas currently classified, and to remind patients of the importance of being demanding when asking about their lymphoma.
V-Care hosted a panel with doctors patient representive and social workers with a question and answer session for patients and family members. V-Care also organised an entertainment program at Tata Memorial Hospital.
On 14 September, Linfovita organised a Press Conference on Lymphoma in Italy - The daily obstacles, the needs of patients, the value of time. On this occasion, the organisation will present the preliminary findings of its 2016 survey on the quality of life of patients diagnosed with lymphoma, as well as an awareness project promoted by the Italian Institute of Photography.
On 15 September, several events took place all day long in Milan (Italy). In the morning, volunteers (patients, survivors, caregivers, doctors, researchers) informed people and promoted awareness about lymphoma, offering them free checks of their health status in different booths. In the afternoon, a "Free Hugs Session" with music and entertainment brought hugs all around the city.
These events were organised by Linfovita in collaboration with the Welfare Department of the Lombardy Region and with the patronage of the National Ministry of Health.
MOHA - Hungary
MOHA celebrated the World Lymphoma Awareness Day by organising a Patients-Doctors seminar that took place in Debrecen (Hungary), launching a patient education film and releasing green balloons on 15 September.
In occasion of WLAD, Lymphoma Slovakia prepared a press release and a set of activities that support the global campaign #KnowYourSubtype. We explain the importance for patients of knowing their subtype, and we launched new patient services such as regional patient trustees, a permanent advisory office, and new subtype-oriented brochures:
Lymphoma Slovakia developed a social media campaign with news, photos and a facebook contest to raise awareness: https://www.facebook.com/lymfomaslovensko/
The organisation also shared two stories of young patients diagnosed with lymphoma. One of them is a young sportsman who decided to help lymphoma patients by joining the Lymphoma Slovakia team and managing the instagram account dedicated to information, interviews and motivation through sport.