Pan European and International
Support for Pan-European patient organizations and International Patient Organizations with offices or activities in Europe:
EMSP
- Consultation fees for input to Celgene clinical trial design
€?630.00 - Support for the EMSP Spring Conference 2018
€?10,166.10
EuropaColon
- Support for 2018 pancreatic cancer activities
€?12,500.00
European Brain Council
- 12-month EBC membership fees
€?20,000.00 - Support for MS Policy Narrative Project
€?40,000.00
European Cancer Patients Coalition
- Consultation fees for review of Celgene clinical trial lay summaries
€?371.70 - Support for clinical trials seminar and pancreatic cancer activities
€?25,000.00
European Federation of Crohn’s and Ulcerative Colitis Associations – EFCCA
- 2018 annual corporate membership
€?8,474.58 - Contracted service for Clinical Trials Knowledge Sharing – publication of a Celgene trial on the EFCCA website
€?10,000.00
European Patients Forum (EPF)
- Support for EPF’s 2018 Workplan
€?15,000.00
EURORDIS (European Organization for Rare Diseases)
- ERTC Membership Fees and support for international initiatives
€?90,000.00
International Alliance of Dermatology Patient Organizations
- Participation in 3 sessions at the Celgene Learning Lab at EADV 2018
€?7,379.29
Lymphoma Coalition
- Support for the Lymphoma Global Patient Survey
€?8,474.58 - Support for the Lymphoma Global Summit
€?29,661.02
Myeloma Patients Europe
- Speaking engagement at an internal Celgene meeting, including honoraria, travel and accommodation
€?1,116.03 - Support for the Pan-Hematology Community Advisory Board in June 2018
€?15,000.00 - Support for MPE’s 2018 activities
€?100,000.00
Patient Focused Medicine Development / The Synergist
- Support for the Reasonable Agreements Between Patient Advocacy and the Pharmaceutical Industry initiative (RAPP)
€?2,000.00
IFPA International Federation of Psoriasis Associations
- Travel and accommodation to present at a World Psoriasis Day event at Celgene Boudry
€?1,155.62 - Participation in 3 sessions at the Celgene Learning Lab at EADV 2018 for IFPA and the Global Psoriasis Coalition
€?7,379.29 - IFPA’s Partnership Program and Global Psoriasis Coalition membership fees
€?95,000.00
International Myeloma Foundation
- Support for GMAN – Global Coalition that empowers patients through education and advocacy, raises the capabilities of PAGs around the globe, advocates for access to treatments and improves outcomes through education.
€?127,118.64 - Support for European Patient and Family Seminars, IMF Publications and translations, Myeloma Minute European Versions
€?233,050.85
Multiple Sclerosis International Federation
- Support for Atlas of MS project
€?6,355.93 - Support for World MS Day
€?12,711.86 - Support for Access to Effective Treatment project
€?12,711.86 - Support for informed decision making project
€?12,711.86
Thalassaemia International Federation
- Support for e-educational platform for healthcare professionals
€?16,949.15 - Support for 2018 educational activities, including publications for patients, ThalPal Mobile App, e-platform for patients, TIF Collaborating Centres Network
€?57,627.12
EUROPSO
- Support for the 2018 EUROPSO Annual Meeting and 30th Anniversary Awards Dinner
€?7,500.00
Austria
Myelom- und Lymphomhilfe ?sterreich
- Consultation Fees for Celgene Packaging Advisory Board
€?130.00
?MSG gemeinnützige Privatstiftung
- Support for patient education projects and MS awareness
€?5,000.00
Pro Rare Austria
- Support for the organization of Austrian conference for rare diseases and European Conference on Rare Diseases & Orphan Products; creation of a national action plan for rare diseases; relaunch of website
€?3,000.00
PsO Austria – Verein und Selbsthilfegruppe der PsoriatikerInnen ?sterreichs
- Support for the organization of PsO information day
€?400.00
SHG Pankreaskarzinom
- Support for website maintenance and printing costs for flyer
€?1,000.00
Belgium
CMP Vlaanderen
- Grant for the daily activities of the organization
€ 4,000.00 - Grant for patient survey in collaboration with MyMu
€ 8,077.00
European Patient’s Academy (EUPATI) Belgium
- Support for the organization of Pati?ntenforum 2018
€ 1,500.00
GIPSO asbl
- Grant for the daily activities of the organization
€ 3,250.00
MyMu
- Grant for the daily activities of the organization
€ 4,000.00 - Grant for patient survey in collaboration with CMP Vlaanderen
€ 8,077.00
Psoriasis Liga Vlaanderen
- Grant for projects and activities in 2018
€ 3,000.00
Psoriasis-Contact
- Support for the daily activities of the organization
€ 3,000.00
Reumanet vzw Belgium
- Grant for the support of activities in 2018 and creation of a patient brochure
€ 5,000.00
Bosnia and Herzegovina
Mijelom u BIH
- Support for the meeting “You are not alone” for MM and MDS patients
€ 3,000.00
Savez za Rijetke bolesti Republike Srpske
- Support for the organization of Rare Disease Day 2018
€ 1,000.00
Croatia
Croatian Psoriasis Association
- Support for a public campaign for World Psoriasis Day
€ 1,000.00 - Support for reprinting of booklets, update of webpage and patient’s awareness meeting
€ 4,000.00
Croatian Alliance for rare diseases
- Support for Rare Disease Day 2018 and The 5th National Conference on Rare Diseases
€ 4,500.00
Croatian society leukemia and lymphoma
- Support for 2018 projects: Health through knowledge, I have only one wish, Blood cancer exists and multiple hematology World Awareness Days
€ 2,645.76
Myeloma CRO
- Support for 2018 meetings, including: Lecture and discussion between patients and doctors on Multiple Myeloma and Myeloma South East Europe Network AB
€ 2,645.76 - Support for travel expenses to attend the CEE Health Innovation Forum in Warsaw, Poland
€ 194.35 - Support for a delegate to attend the CEE Health Innovation Forum in Warsaw, Poland
€ 930.00
Czech Republic
Mnoho?etny myelom klub pacient?
- Support for the project “Should Myeloma be Painful” and tailored educational activities for myeloma patients
€ 2,528.39 - Support of Multiple Myeloma patient group activities in 2018
€ 11,669.49
OnkoMajak
- Support for the campaign “Pancreatic cancer in the Czech republic”.
€ 23,436.23
Spolek Diagnóza leukemie, z.s
- Support of MDS patient group activities in 2018
€ 18,671.19
Spolek psoriatik? a atopickych ekzematik? (SPAE)
- Attendance at an educational activity held in Warsaw
€ 1,478.68 - Participation at the Celgene Learning Lab (gift in kind)
€ 2,459.76 - Support to attendance at the EADV 2018 congress in Paris
€ 3,660.45 - Support for 3 delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€ 2,670.00
Denmark
Dansk Myelomatose forening
- Support for 2018 network meetings
€ 2,012.29
FAIM
- 2018 membership fees
€ 200.00 - Support for a conference on autoimmune diseases
€ 3,354.00
Lungekr?ft
- 2018 membership fee
€ 533.00
LyLe
- Support for patient and family seminar
€ 16,000.00
Psoriasisforeningen DK
- 2018 Membership fee
€ 253.00 - Support for the PSOMentor Application
€ 2,000.00
Scleroseforeningen
- Sponsorship of Cykelnerven Disease awareness
€ 33.333.00
Finland
Psoriasisliitto
- Support for World Psoriasis Day
€ 2,200.00
Suomen Sy?p?potilaat Finish Cancer Patients
- Consultation Fees for Celgene Packaging Advisory Board
€ 130.00 - Support for EHA Sharing best practice meeting among Nordic PAG
€ 280.95 - Support for the project: Beating Cancer with Life Science
€ 300.00 - Support for the EUPATI network
€ 3,700.00
France
AF3M
- Contracted service in the Humagine project (project to improve experience of chronic disease patients), including fees, transportation, and meals
€ 2,256 - Contracted service for consulting in a video with patient testimonials including honoraria of AF3M and related transportation
€ 368.00 - Contracted service for consulting RC3M board: project to develop a multiple myeloma competency repository
€ 640.00 - Contracted speaking engagement for annual “Ateliers Celgene” meeting with French HCPs including honoraria, transportation and meals
€ 932.00 - Contracted service for the review of a draft Informed Consent Form template for clinical studies
€ 1,120.00 - Supply of 2000 information leaflets for the National Multiple Myeloma Day
€ 2,620.00 - Grant to support National Multiple Myeloma Day in 25 French towns
€ 60,000.00
Association de Soutien et d’Information à la Leucémie Lympho?de Chronique et la maladie de Waldenstr?m (SILLC)
- Contracted service for consulting in a video of patients testimonials including SILLC honoraria and patient’s transportation
€ 455.00
Association Fran?aise du Vitiligo
- Participation at the Celgene Learning Lab at EADV 2018
€ 2,459.76
Association la Compagnie des Aidants
- Grant to support the development of a self-training platform
€ 50,000.00
France Lymphome Espoir
- Contracted service for consulting in a video of patients testimonials including FLE honoraria and transportation of patient
€ 261.00 - Grant to support the meeting “Lymphormons-nous” in the town of Nantes
€ 5,000.00 - Grant to support World Lymphoma Day in various locations in France
€ 15,000.00 - Consultation Fees for Celgene R&D (CAR T)
€ 480.00
France Psoriasis
- Contracted service in the Humagine project (project to improve experience of chronic disease patients), including fees, transportation, and meals
€ 4,419.00 - Contracted service for consulting in a video with patients testimonials including Fr Pso honoraria and transportation of patient
€ 768.00 - Participation at the Celgene Learning Lab at EADV 2018
€ 2,459.76 - Contracted service for consulting in the “PSOPRO” project, the national survey of the impact of psoriasis on patients lives, including honoraria and transportation
€ 7,697.00 - Grant to support World Psoriasis Day
€ 25,000.00
Lymphoma Coalition
- Consultation fees for review of Celgene clinical trial lay summaries
€ 566.40
TRANS-FORME
- Grant in the context of inter enterprise consortium to support sports-medico events of TransForme
€ 4,500.00 - Grant to support two running event as part of an organ donation awareness campaign “Course du Coeur” (Paris- Bourg St Maurice- les Arcs) 2018 and 2019
€ 35,400.00
Germany
Greece
EOTHA – Greek Thalassaemia Federation
- Supporter-level sponsorship of National Educational-Informative Conference
€ 10,000.00
ESTHA Greek Thalassemia association
- Support for Educational meeting for patients, focused on liver, kidney and endocrinological complications in Thalassaemia
€ 5,000.00
K.E.FI OF ATHENS – ASSOCIATION OF CANCER PATIENTS
- Impact PANC 2017 Award Program
€ 16,949.15
Hungary
Az Egészségügyben dolgozókért 2009 Alapítvány
- Support the yearly activities of the Oncohematology Patient Club, including support for travel of patients to events within Hungary
€ 1,567.80
Ireland
Italy
Lithuania
OHLB “Kraujas”
- Support for the organization of Blood Day
€ 1,300.00 - Support for the organization of Blood Day
€ 1,700.00 - Preparation and publication of myeloma information and booklet and PR activities
€ 3,000.00
Republic of North Macedonia
National Alliance for Rare Diseases of Macedonia (NARDM) LIFE WITH CHALLENGES Bitola
- Support for the organization of Rare Disease Day 2018 and a patients marathon
€ 2,500.00
Netherlands
Alvleesklier vereniging NL
- Support for Alvleeskliervereniging activities for patients with pancreatic diseases
€ 2,500.00
Huidfonds
- Support for Huidfonds activities for patients with skin diseases
€ 5,000.00
Huidpati?nten Nederland
- Support for a patient information event – Happy met je Huid festival
€ 5,000.00
MS Vereniging
- Support for a patient information event – MS and work
€ 4,558.00
Reumazorg Nederland
- Support for a patient event for patients with rheumatic diseases
€ 1,750.00 - In kind donation of ′Inzichtbaar′ books that were published by Celgene that feature patient stories
€ 6,100.00
Norway
Blodkreftforeningen
- Disease awareness through support of BKF membership publication
€ 1,271.19 - Support for national member survey 2018
€?3,559.32
Poland
ALIVIA – Oncological Foundation of Young People
- Support for the educational campaign “Prosto w raka”
€?14,222.03 - Support for delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€?250.00
Carita Foundation – Living with Multiple Myeloma
- Support for the national congress for MM patients
€?54,517.80 - Support for delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€?2,600.00
Hospice Foundation – Fundacja Hospicyjna
- Organization of 3 editions of educational training for nurses and medical carers
€?11,851.69
National Forum for Rare Diseases ORPHAN
- Support for National Awareness Day on Rare Diseases and nationwide awareness campaign on rare diseases
€?3,555.51 - Support for the organization of an HTA conference: Rare Diseases and Orphan Drugs – challenges for Poland
€?12,041.32 - Support for delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€?320.00
Ogólnokrajowe Stowarzyszenie Pomocy Chorym na Przewlek?? BIa?aczk? Szpikow?/National Association for CML Patients Help
- Donation for regional support groups
€?11,851.69 - Support for delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€?1,600.00
Polskie Stowarzyszenie Pomocy Chorym na Szpiczaka/Polish Association for MM Patients Aid
- Support for educational workshops for MM patients in Torun
€?31,013.52 - Support for the organization of XIII Educational Congress for MM patients
€?42,666.10 - Support for three projects: Social campaign “Back pain”; Educational campaign to raise the awareness on MM; Social media campaign
€?52,147.46 - Support for delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€?5,000.00
Together in Disease Foundation – Fundacja Razem w Chorobie
- Support for educational forum of PAGs
€?23,703.39
Unia Stowarzyszen Chorych na ?uszczyce i ?ZS
- Support for delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€?320.00
Ursula Jaworska’s Foundation (Fundacja Urszuli Jaworskiej)
- Support for delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€?600.00
Foundation Hospice of Saint Christoph (Fundacja Hospicjum Onkologiczne Sw. Krzysztofa)
- Support for delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€?250.00
Polish Cancer Patients Coalition (polska Koalicja Pacejntow Onkologicznych)
- Support for delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€?600.00
Stowarzyszenie Wsperaj?ce Chorych na Ch?oniaki – Sowie Oczy
- Support for delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€?630.00
Portugal
Associa??o Portuguesa Contra a Leucemia – APCL
- Project “Casa Porto Seguro”
€ 6,000 - Clarification and debate session at Culturgest
€ 2,500
Europacolon Portugal – Associa??o de Luta Contra o Cancro do Intestino
- Support Pancreatic Cancer early diagnosis – National Pancreatic Cancer Awareness Action
€ 10,000
Associa??o Portuguesa de Leucemias e Linfomas (APLL)
- Consultation fees for review of Celgene clinical trial lay summaries
€ 180
Russian Federation
All-Russian public organization ?Ligue patients’ defenders?
- Support for the 8th Russian National Right to Medications Congress
€ 10,084.75
All-Russian public organization of disabled people ?Russian Society of Hematology “SODEJSTVIE” (RSH ?SODEJSTVIE?)
- Support for 8 regional roundtables
€ 4,322.03
Interregional Charitable Public Organization “Skin and Allergic Diseases”
- Participation in 2 sessions at the Celgene Learning Lab at EADV 2018
€ 4,919.53 - Support for two webinar events for people with psoriasis and/or psoriatic arthritis and a social campaign “Remission is possible” on the Internet and social networks
€ 6,483.05 - Support for activities for patients with PsO and PsA; Three “Schools of psoriasis and psoriatic arthritis” in Russia; and preparing informational printed materials for patients
€ 10,805.08
Inter-regional public organization for patients with hematological diseases Mercy Bridge
- Support for the development of a website, donor initiatives, and patient workshops
€ 27,516.95
National Association of the organizations for patients with rare diseases “Genetics”
- Support for three round tables held in 3 regions (St. Petersburg, Leningrad Region, Moscow Region)
€ 9,364.41 - Support for the Altaian regional conference “Rare diseases yesterday, today and tomorrow” and two regional round tables
€ 9,364.41
RUSSIAN PATIENTS ASSOCIATION
- Support for the Ninth All-Russian Congress of Patients
€ 10,084.75
Serbia
National Organization for Rare Diseases Serbia
- Support for education about rare diseases project and a regional rare disease Balkan conference
€ 5,000.00 - Support for travel expenses to attend the CEE Health Innovation Forum in Warsaw, Poland
€ 402.59 - Support for a delegate to attend the CEE Health Innovation Forum in Warsaw, Poland
€ 930.00
The Association of Myeloma Patients of Serbia
- Support for a meeting of Myeloma today
€ 1,500.00
Slovakia
NIE Rakovine o.z.
- Support for patient association in printing of the interactive books for inpatients (details enclosed)
€ 5,000.00 - Support for the “Oncology Patient Project”
€ 10,000.00 - Support for communication activities for patients, nurses, HCPs, members meeting – seminar, psycho-social support and advice
€ 15,000.00 - Support for 2 delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€ 1,800.00
ONKOINFO o.z.
- Support for the creation, maintenance, technical and administrative support of Onkoinfo web portal.
€ 10,000.00
OZ Slovensky pacient
- Support for the publication of 15 dermatology focused articles on the website www.slovenskypacient.sk and print versions
€ 4,000.00
Spolo?nos? psoriatikov a atopikov SR
- Support for the project Rise Up Against Psoriasis and related webpage www.vzoprisapsoriaze.sk, and the organization of Hug Day
€ 28,560.00
Zdru?enie pacientov s hematologickymi malignitami
- Support for patient education
€ 16,200.00 - Support for a delegate to attend the CEE Health Innovation Forum in Warsaw, Poland
€ 930.00
Slovenia
Association of patients with blood diseases
- Support for a guidelines booklet for MDS patients
€ 3,000.00 - Support for patient social programs in 2018
€ 7,000.00 - Support for 2 delegates to attend the CEE Health Innovation Forum in Warsaw, Poland
€ 1,800.00
Slovenian Association of Lymphoma and Leukaemia Patients
- Support for a holistic rehabilitation program, booklet for patients and the Back to Life awareness campaign
€ 5,500.00 - Support for travel expenses to attend the CEE Health Innovation Forum in Warsaw, Poland
€ 366.85 - Support for a delegate to attend the CEE Health Innovation Forum in Warsaw, Poland
€ 930.00
Spain
Sweden
Blodcancerf?rbundet
- Consultation Fees for Celgene Packaging Advisory Board
€ 98.33 - Support for Lymfomsatsning event
€ 1,968.65 - Sponsorship of the Swedish MDS & AML Day 2.0
€ 4,001.02 - Sponsorship of Inga fler utredningar
€ 7,926.78
N?tverket mot cancer
- Sponsorship of World Cancer Day
€ 1,314.54
Psoriasisf?rbundet
- Sponsorship of World Psoriasis Day
€ 3,010.17
Ung med Psoriasis
- Support for “Movies with clothes for young psoriasis patients”
€ 3,539.96
Switzerland
ho/noho – Schweizerische Patientenorganisation für Lymphombetroffene und Angeh?rige
- Support for disease awareness activities
€ 8,936.82
MKgS – Myelom Kontaktgruppe Schweiz
- Support for Patient Survey & Communications Channels
€ 29,960.59
Rheumaliga Schweiz
- Support for annual activities
€ 8,560.17
Schweizerische Pankreasstiftung
- Support for disease awareness activities
€ 30,816.61
SKS – Stiftung zur F?rderung der Knochenmarkstransplantation Schweiz
- Support for patient groups
€ 17,120.34
SPVG
- Support for public disease awareness
€ 31,255.32
SSP – Schweizer Selbsthilfeorganisation Pankreaserkrankungen
- Support for disease awareness activities
€ 6,420.13
Survival Story
- Support for disease awareness activities
€ 7,345.48
Turkey
Cancer Fighters Association
- Donation to the project: ‘Patient School for Multiple Myeloma Patients’
€ 3,306.36
Leukemia Lymphoma Myeloma Patients and Research & Education Association
- Donation to support association’s meeting titled ‘Multiple Myeloma Diagnosis and Treatment Approaches for Hematologists’
€ 3,306.36 - Donation to support association’s ‘6th Leukemia Lymphoma Myeloma Patients Congress’
€ 6,612.71
Thalassemia Federation
- Support for Thalassaemia meeting
€ 3,306.36