


- POČETNA
- O NAMA
- AKTUALNO
- MEĐUNARODNE ASOCIJACIJE
- KONTAKT
- POVEZNICE
- PRAVA PACIJENATA
- ORGANIZACIJE
- Hrvatsko društvo za hematologiju hrvatskog liječničkog zbora (HRDH)
- Hrvatska kooperativna udruga za hematološke bolesti – KROHEM
- The European Hematology Association (EHA)
- The European Group for Blood and Marrow Transplantation (EBMT)
- The European Organisation for Research and Treatment of Cancer (EORTC)
- European LeukemiaNet
- The American Society of Hematology (ASH)
- The American Society for Blood and Marrow Transplantation (ASBMT)
- The International Society of Hematology (ISH)
- The American Society of Pediatric Hematology/Oncology (ASPHO)
- The Society for Hematology and Stem Cells (ISEH)
- The International Myeloma Foundation (IMF)
- The Society for Immunotherapy of Cancer (SITC)
- The International Society on Thrombosis and Haemostasis (ISTH)
- The Society for Hematopathology
- The American Society of Clinical Oncology (ASCO)
- The European Society for Medical Oncology (ESMO)
- ČASOPISI
Lymphoma Coalition 2020 GPS Final Numbers & CAR-T Toolkit
Dear Members,
A quick update as the final numbers for the 2020 GPS have been tabulated, which many have been anxiously awaiting.
As well, to help members continue to support patients with lymphoma and their carers, the CAR-T toolkit is now available, accessible via the link at the bottom of this email. If you need help with local customisation, please reach out to marketing@lymphomacoalition.
2020 GLOBAL PATIENT SURVEY ON LYMPHOMA & CLL
Thank you to everyone who participated in promoting the 2020 Global Patient Survey. Due to a combined effort of your patient organisations, we have well surpassed last year's survey count, and noticeably exceeded expectations for this year's goal.
The final total number of responses is 11 879 (2 699 caregivers; 9 180 patients). See below for a breakdown of each member country who received responses:
The highlighted countries have surpassed 100 patient responses, and will be receiving a country report.
Country
Total
Caregiver
Patient
Country
Total
Caregiver
Patient
Algeria
7
3
4
Lithuania
47
10
37
Argentina
138
25
113
Mexico
12
2
10
Australia
422
64
358
Morocco
29
14
15
Barbados
1
0
1
Netherlands
333
27
306
Belgium
165
18
147
New Zealand
367
29
338
Brazil
8
1
7
Norway
6
0
6
Bulgaria
117
35
82
Poland
1
0
1
Canada
603
63
540
Portugal
24
2
22
China
3240
1483
1757
Romania
1
0
1
Colombia
2
0
2
Serbia
206
64
142
Croatia
21
3
18
Singapore
1
0
1
Czech Republic
9
1
8
Slovakia
164
62
132
Denmark
20
2
18
Slovenia
15
2
13
Finland
53
2
51
South Africa
12
5
7
France
1747
170
1577
South Korea
147
2
145
Germany
51
7
44
Spain
59
9
50
Greece
11
3
8
Sweden
190
4
186
Hong Kong
27
10
17
Switzerland
69
6
63
Hungary
3
0
3
Turkey
4
1
3
India
200
81
119
United Kingdom
743
64
679
Ireland
179
31
148
United States
1098
105
993
Israel
6
1
5
Uruguay
106
23
83
Italy
803
225
578
Venezuela
4
2
2
Japan
290
46
244
Survey responses have also been tracked by subtype:
Subtype
Total
Caregiver
Patient
Anaplastic Large Cell
154
69
85
Burkitt's
177
85
92
CLL/SLL
2019
244
1775
CL
525
55
470
DLBCL (unspecified)
1281
329
952
DLBCL – Activated B-Cell (ABC)
525
235
290
DLBCL – Germinal Centre B-Cell (GCB)
333
150
183
Extranodal Killer T-cell
258
129
129
FL
1786
266
1520
HL
1692
377
1315
Mantle Cell
384
161
223
MALT / Marginal Zone
267
59
208
Peripheral T-cell
269
151
118
Transformed
167
40
127
WM
1069
110
959
Country reports and subtype reports are currently being written, and will be distributed to members in the coming months. Please note, the reports at the earliest will be available in June and may be delayed due to capacity related to COVID-19. An update will be sent closer to June on when to anticipate these reports.
CAR-T TOOLKIT
CAR-T is a complicated treatment with a protocol unlike any other therapy used to date to treat lymphomas. LC has created a variety of resources to help you communicate the facts about CAR-T to your patients.
CLICK HERE TO ACCESS THE CAR-T TOOLKIT
On the Member's side of the LC website, you will find the CAR-T toolkit which contains:
If you need help with your login to the Member's side, contact marketing@lymphomacoalition.
On the LC website, you will also find a new page dedicated to CAR-T, including a way to easily access the latest news on CAR-T in the resource library.
A toolkit on the Fear of Cancer Recurrence (FCR) will also be coming soon.
Warm regards,
Lorna
Podijeli


Hrvatska udruga leukemija i limfomi
predsjednik Dražen Vincek
Trg hrvatskih velikana 2/ll
10 000 Zagreb
GSM: +385 (0)91 4873 561
TEL: +385 (0)1 4873 561
e-mail: udruga.hull.zagreb@gmail.com
Web adresa: www.hull.hr
IBAN: HR 36 2340 0091 1100 4711 4
SWIFT CODE: PBZGHR2X