Lymphoma Coalition
Acronym: LC
General Information
Identification Code: 809500545743-75
Website: [object Object]
Entity Form: Non profit organisation
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 3/8/2022
Last Update: 3/6/2024
EP Accredited Number: 0
Mission & Interests
Goals: Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to patients with lymphoma, was formed in 2002 and incorporated as a not for profit organisation in 2010.
The need for a central hub of consistent as well as reliable current information was recognised as well as the need for lymphoma patient organisations to share resources, best practices, and policies and procedures. With this in mind, four lymphoma organisations started the LC. Today, there are over 90 member organisations from over 55 countries.
LC’s current strategy is focused on ensuring impact within two pillars: information and advocacy.
Vision: Equity in lymphoma outcomes across borders.
Mission: Enabling global impact by fostering a lymphoma ecosystem that ensures local change and evidence-based action.
Interests Represented: Promotes their own interests or the collective interests of their members
Interests:
- Communication
- Education and training
- Employment and social affairs
- Humanitarian aid and civil protection
- International co-operation and development
- Public health
- Research and innovation
Levels of Interest:
- sub-national
- global
- european
Activities
Main EU Legislative Proposals: Bringing lymphoma and CLL into the Beating Cancer plan in a useable and actionable way. As blood cancers are not preventable, cannot be screened for, and are often treated uniquely, the current plan does not well reprepsent this group of cancers. We strive to ensure the specific needs of blood cancer patients are properly represented.
In addition, LC is interested in the following (not limited to):
Right to be Forgotten
Clinical Trials Regulation
Pharmaceutical Legislation
Joint Clinical Assessments - EU HTA Stakeholder Network
Communication Activities: Provided feedback to the BECA plan throughout the consultation process
Provided feedback to the Joint Clinical Assessment and EUnetHTA open consultations
Provided feedback to the Pharmaceutical Legislation
Members of the HTA Stakeholders Network
Actively involved in the Code of Conduct access to financial services cancer patients
Inter-institutional or Unofficial Groupings: Cancer
Head Office
Address: 401-8 Stavebank Rad N
Post Code: L5G 2T4
City: Mississauga
Country: CANADA
Phone: [object Object]
EU Office
Address: 1 avenue Claude Vellefauxcedex 10
Post Code: 75475
City: Paris
Country: FRANCE
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Membership Information
Members10 Percent: 2
Members25 Percent: 0
Members50 Percent: 1
Members75 Percent: 0
Members: 3
Members F T E: 0.699999988079071
Structure
Structure Type: Structure
Is Member Of: European Hematology Association - European Affairs Committee https://ehaweb.org/organization/committees/european-affairs-committee/#:~:text=Aim,Office%20and%20other%20EHA%20Committees.
European Bone and Marrow Transplant Group Patient Advocacy Committee https://www.ebmt.org/patient-advocacy-committee
ESMO Patient Advocates Working Group https://www.esmo.org/about-esmo/organisational-structure/european-policy-committee/patient-advocates-working-group
Organisation Members: European Cancer Organisation through the Patient Advisory Committee https://www.europeancancer.org/patients
European Hematology Association - European Affairs Committee https://ehaweb.org/organization/committees/european-affairs-committee/#:~:text=Aim,Office%20and%20other%20EHA%20Committees.
Global Cancer Coalitions Network https://www.globalccn.org/
UICC https://www.uicc.org/membership/lymphoma-coalition
WECAN https://wecanadvocate.eu/#participants