Pan European and International (2019)
Support for Pan-European patient organizations and International Patient Organizations with offices or activities in Europe:
A.D.I.PSO. – Associazione per la Difesa degli Psoriasici Onlus
- Participation to the “reaching the consensus” roundtable at WCD in Milan
£ 690.30
DEGETHA e.V.
- Participation roundtable meeting on Patient Blood management
€ 1,165.29
Digestive Cancer Europe vzw/asbl
- Sponsorship for 2019 Masterclass
€ 10,000
DPB – Deutscher Psoriasisbund e.V.
- Participation to the “reaching the consensus” roundtable at WCD in Milan
£ 1,483.96
EMSP
- Participation at Celgene Patients’ Partners Steering Committee meeting
€ 316
EUPATI gUG
- WECAN Masterclass on Patient Advocacy
€ 7,500
European Cancer Patients Coalition
- Support 2019 Work Plan
€ 35,000
European Cancer Patients Coalition
- Consultation fees for review of Celgene clinical trial lay summaries
€ 945
EUROPEAN FEDERATION OF CROHN’S AND ULCERATIVE COLITIS ASSOCIATIONS – EFCCA
- Annual Corporate membership and support for World IBD Day
€ 13,500 - Participation at Celgene Patients’ Partners Steering Committee meeting
€ 599.3 - World IBD Day Sponsorship
€ 5,000
European Patients’ Forum (EPF)
- Support for 2019 EPF Work Plan
€ 30,000 - Support for the implementation of the European Patients’ Forum Congress 2019
€ 25,000 - Participation at Celgene Patients’ Partners Steering Committee meeting
€ 869.94
European Society for Medical Oncology (ESMO)
- ESMO Patient Advocacy Tracker Support
€ 15,000
EUROPSO
- Participation to the “reaching the consensus” roundtable at WCD in Milan
£ 3,040.53 - Support for the 2019 EUROPSO activities
€ 30,000
EURORDIS – Rare Diseases Europe
- ERTC Membership Fees and support for international initiatives
€ 90,000
IFPA – International Federation of Psoriasis Associations
- Participation to the “reaching the consensus” roundtable at WCD in Milan
£ 790.69 - Psoriasis Readiness Index
182,300 kr (SEK) - IFPA Partnership Program
€ 70,000 - Global Psoriasis Coalition
€ 30,000 - Social media collaboration
€ 36,856
International Myeloma Foundation
- 2019 IMF European Patient & Family Seminars; 2019 IMF Publications and Translation; 2019 Myeloma Minute European versions {Spanish, French, Italian, German}
$ 225,000 - Global summit of patient organizations that serve the MM patient community.
$ 150,000 - Translation of patient educational brochures
$ 40,000
Lung Cancer Europe (LUCE)
- Lung Cancer 2019 educational programmes and evidence-based generation
€ 12,000
Lymphoma Coalition
- Lymphoma and CLL Community Advisory Board (CAB)
€ 25,000 - Consultation fees for review of Celgene clinical trial lay summaries
€ 560 - Participation at Celgene Patients’ Partners Steering Committee meeting
€ 598.90 - Participation of a publication paper by Lymphoma Coalition
$ 25,000 - The goal this year is to increase patient empowerment to build confidence and competence to act individually and collectively to communicate patient experiences.
$ 35,000
Myeloma Patients Europe
- Myeloma Patients Europe (MPE) Programmes
€ 100,000 - Support for Myeloma Community Advisory Board
€ 20,000 - Participation at Celgene Patients’ Partners Steering Committee meeting
€ 488
Pancreatic Cancer Europe ASBL
- Sponsorship for 2019 Action Plan
€ 57,500
Thalassaemia International Federation
- TIF patient education and advocacy activities
€ 100,000 - Speaker at roundtable meeting on Patient Blood management
€ 2,066.46 - Participation roundtable meeting on Patient Blood management
€ 1,110.62 - Participation at Celgene Patients’ Partners Steering Committee meeting
€ 1,100
Austria (2019)
Multiples Myelom Selbsthilfe Österreich
- Support to run patient meetings and symposia throughout the year
€ 10,000 - Support for project “Myelom am Telefon”
€ 5,000
ÖMSG gemeinnützige Privatstiftung
- Support for World MS Awareness Day
€ 1,500
PsO Austria – Verein und Selbsthilfegruppe der PsoriatikerInnen Österreichs
- Support for creation of PSO Journal
€ 600
Leukämiehilfe Steiermark
- Sponsoring Leukemia Help Run 2019
€ 1,000
Myelom- und Lymphomhilfe Österreich
- Online Decision Aid
€ 20,000 - Patients’ Partners Impact Heme Award Program
€ 20,000
Belgium (2019)
EMSP
- Young People Network Program
$ 19,827 - Annual Patient Conference
$ 39,680 - Capacity Building
$ 15,285 - MS Nurse PRO
$ 40,000 - MSData Alliance
$ 38,500 - Supporting Care Partners of Pediatric MS Patients
$ 20,000 - Attendance by EMSP at the Patients’ Partners Learning Labs at ECTRIMS
$ 13,000
European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF)
- EU-IPFF Corporate Membership
$ 5,600
EUROPEAN FEDERATION OF CROHN’S AND ULCERATIVE COLITIS ASSOCIATIONS – EFCCA
- Consultation fees for review of Celgene clinical trial lay summaries
€ 10,000
Croatia (2019)
Remisija
- Support to attend the CEE Celgene Patient’s Partners Summit in Warsaw
6,306 zł
Croatian Psoriasis Association
- Financial support to organize 2nd Croatian Psoriasis Patient Congress
€ 6,000
Croatian society leukemia and lymphoma
- Support to attend the CEE Celgene Patient’s Partners Summit in Warsaw
6,086 zł - Financial support to celebrate World Myelodysplastic Syndrome (MDS) Day
€ 2,000
Myeloma CRO
- Financial support for meeting with patients and physicians in Zagreb and Rijeka
39,000 kn
Czech Republic (2019)
Mnohočetný myelom klub pacientů
- Support of Multiple myeloma patient group activities in 2019
365,000 Kč
OnkoMajak
- Campaign „Pancreatic cancer in the Czech republic“- follow up of the project in 2019
460,000 Kč - Attendance of Mr. Kruber at World pancreatic cancer coalition annual meeting 2019 in Florida, USA
37,600 Kč - Attendance of Mr. Kruber at CEE Celgene Patients’ Partners Summit in Warsaw
2,617.44 zł - Attendance of Mrs. Niklova at CEE Celgene Patients’ Partners Summit in Warsaw
2,617.44 zł
Spolek Diagnóza leukemie, z.s
- Support of MDS patient group activities in 2019
480,000 Kč
Spolek psoriatiků a atopických ekzematiků (SPAE)
- Project “Life with psoriasis” in 2019
900,000 Kč - Attendance of Mr. Pohůnek at EADV Congress in Madrid in 2019
66,600 Kč - Attendance of Mrs. Přikrylová at CEE Celgene Patients’ Partners Summit in Warsaw
2,284.11 zł - Attendance of Mrs. Jirdová at CEE Celgene Patients’ Partners Summit in Warsaw
2,284.11 zł - Attendance of Mr. Jambor at CEE Celgene Patients’ Partners Summit in Warsaw
2,284.11 zł
LYMFOM HELP, z.s.
- Activities of LYMFOM HELP, z.s. Association in 2019
80,000 Kč
GENERACE i60, o.p.s
- Support of oncological educational projects and palliative care
66,600 Kč
Denmark (2019)
LyLe
- Speaker at round table meeting on Patient Blood management
€ 1,774.10
Scleroseforeningen
- Support for annual bicycle race to raise awareness and fundraising
15,000 kr
Dans Myelomatoseforening
- Support to develop a Twitter account
20,000 kr
Finland (2019)
The Finnish Psoriasis Association
- Psoriasis World Day
€ 2,500 - Video Podcast
€ 19,500 - Grant to support 2019 activities
€ 7,500
France (2019)
FMDT SOS GLOBI
- Participation roundtable meeting on Patient Blood management
€ 733.04
AF3M
- Support for “Humagine” project
€ 750 - Support for “Humagine” project
€ 800 - Consulting fees for a video testimonial including transportation & meals
€ 768 - Grant to support National Multiple Myeloma Day in around 20 towns
€ 60,000 - Support the participation to COMy Congress
€ 5,000
France Psoriasis
- Consulting fees for the “Humagine” project
€ 1,760 - Consulting fees for a video testimonial including transportation & meals
€ 1,168 - Grant to support World Psoriasis Day
€ 40,000 - Hospitality for participation to EADV in Madrid
€ 2,586
France Lymphome Espoir
- Consulting fees for a video testimonial including transportation & meals
€ 661 - Grant to support the meeting “Lymphormons-nous”
€ 10,000 - Grant to support World Lymphoma Day
€ 10,000
Association de Soutien et d’Information à la Leucémie Lymphoïde Chronique et la maladie de Waldenström (SILLC)
- Consulting services for a video testimonial
€ 495
Association Connaitre et Combattre les Myélodysplasies
- Grant to support the National Day of Information for patients
€ 30,000
Association Laurette Fugain
- Grant to support a meeting between patients and researchers
€ 10,000
Association Imagine for Margo – Children without Cancer
- Grant to support “children without cancer” race
€ 10,000
Association d’Aide et Soutien aux Malades Maison du Patient (AASM Maison du patient)
- Grant to develop supportive care for patients
€ 3,500
Germany (2019)
Greece (2019)
Greek Thalassaemia Federation / Association
- Participation roundtable meeting on Patient Blood management
€ 2,496.54
K.E.FI OF ATHENS – ASSOCIATION OF CANCER PATIENTS
- Supporting the Physician/Patient Discussion
$ 20,000 - Patients’ Partners ImpactPanc Award program
$ 20,000
Greek Thalassaemia Federation / Association
- Patient forum
€ 10,000
Hungary (2019)
Szent László Őssejt Alapitvány
- Donation for the Association to implement a new diagnostic software for myeloma patient disease
2,339,000 ft (HUF)
Ireland (2019)
Italy (2020)
AIPaSiM – Associazione Italiana Pazienti con Sindrome Mielodisplastica
- Support association’s physicians-patients meetings throughout the nation (Indirect support)
€ 15,000 - Support for the national awareness campaign “Magnifico Donare” promoted by UNITED and AIPaSiM (Indirect support)
€ 106,500
UNITED Onlus – Federazione Italiana Thalassemia, Drepanocitosi e Anemie Rare
- Support association in realizing a social communication disease awareness campaign (Indirect support)
€ 12,000 - Support for the national awareness campaign “Magnifico Donare” promoted by UNITED and AIPaSiM (Indirect support)
€ 106,500
AIL – Associazione Italiana contro le Leucemie-linfomi e mieloma ONLUS
- Support association in organizing the National Mieloma Day Press Conference
€ 5,000 - Support for the national awareness campaign “Mieloma ti sfido: io non mi lascio cadere” promoted by AIL and Lampada di Aladino (Indirect support)
€ 116,000 - Support for homecare service to fragile and not self sufficient haematological patients
€ 50,000 - Support association’s campaign “CAMPAGNA #IOSONOARISCHIO” for 800 Easter Eggs donated to pediatric haematological Hospitals
€ 10,000 - Support the association in organizing a charitable dinner and a virtual Fitwalkin
€ 15,000
LA LAMPADA DI ALADINO ONLUS
- Support association 2021 calendar (Indirect support)
€ 10,000 - Support association’s activities for Covid’s patients assistance and rehabilitation
€ 7,500 - Support association in purchasing 300 masks to be distributed to patients in the Rho hospital
€ 1,800 - Support for the national awareness campaign “Mieloma ti sfido: io non mi lascio cadere” promoted by AIL and Lampada di aladino (Indirect support)
€ 116,000
EUROPA DONNA Italia
- Support the “Laudato Medico 2020” ceremony
€ 15,000
AISM – Associazione italiana Sclerosi Multipla
- Support for the 12th edition of “Convegno Giovani” event aimed at young people suffering from MS (Indirect support)
€ 15,000 - Support for the creation of 20 informative infographics on the MS symptoms (Indirect support)
€ 20,000
UNA MANO ALLA VITA ONLUS
- Loan for use of 8 IPad devices for COVID-19 intensive care patients at the Niguarda Hospital
Non-financial support
Fondazione Italiana “Leonardo Giambrone” per la Guarigione dalla Talassemia e Drepanocitosi
- Support for empowerment laboratories aimed at patients with hemoglobinopathies and their caregivers
€ 8,000
ROMAIL “Vanessa Verdecchia” ONLUS – Associazione Italiana contro le Leucemie-linfomi e mieloma, Sezione di Roma e Provincia
- Support homecare for haematological patients at Umberto I Hospital and San Giovanni Addolorata Hospital in Rome.
€ 30,000
UNIAMO Federazione Italiana Malattie Rare Onlus
- Support “Rari&Smart” project for website renewal www.malatirari.it
€ 10,000
AIPAMM – Associazione Italiana Pazienti con Malattie Mieloproliferative
- Support website renewal www.aipamm.it
€ 10,000
Lithuania (2019)
OHLB “Kraujas”
- Organization of the Blood Day
€ 6,000
Republic of North Macedonia (2019)
National Alliance for Rare Diseases of Macedonia (NARDM) LIFE WITH CHALLENGES Bitola
- Regional meeting to support multiple stakeholder groups
€ 2,000
Netherlands (2019)
CROHN EN COLITIS ULCEROSA VERENIGING NEDERLAND
- Support Patient´s Day 2019 – sponsoring
€ 5,000
Psoriasis Vereniging Nederland
- 3 x Advertisement in Patients Magazine (1260 Euro each)
€ 3,780 - Support of the PN World Psoriasis Day 2019 – Patient event – sponsoring
€ 2,500
Norway (2019)
Blodkreftforeningen
- Support disease awareness video clips for Blodkreftforeningens website, to include HCP and patient perspective
50,000 kr (NOK)
Pankreaskreft Nettverk Norge
- Patients’ Partners ImpactPanc Award Program
$ 20,000
Poland (2019)
Polskie Stowarzyszenie Pomocy Chorym na Szpiczaka/Polish Association for MM Patients Aid
- Support the organization of XIV MM Educational Patients Congress
80,000 zł (PLN)
National Forum for Rare Diseases ORPHAN
- Support the organization of the World Awareness Day for Rare Diseases
15,000 zł (PLN) - Support to attend the CEE Celgene Patients’ Partners Summit
1,140.21 zł (PLN)
Polska Koalicja Pacjentów Onkologicznych/Polish Cancer Patients Coalition
- Support the organization of Nationwide Educational Worshops for hematology patients including MM patients
10,000 zł (PLN) - Support to attend the CEE Celgene Patients’ Partners Summit
1,116.84 zł (PLN)
Ogólnokrajowe Stowarzyszenie Pomocy Chorym na Przewlekłą BIałaczkę Szpikową/National Association for CML Patients Help
- Support to attend the CEE Celgene Patients’ Partners Summit
1,473.54 zł (PLN)
Carita Foundation – Living with Multiple Myeloma
- Support to attend the CEE Celgene Patients’ Partners Summit
5,718.17 zł (PLN) - Speaker’s engagement at the CEE Celgene Patients’ Partners Summit
346.85 zł (PLN) - Support the organization of educational meetings for MM patients
30,000 zł (PLN)
ALIVIA – Oncological Foundation of Young People
- Support to attend the CEE Celgene Patients’ Partners Summit
1,140.21 zł (PLN) - Knowledge platform about cancer (Baza wiedzy o raku)
10,000 zł (PLN) - Speaker’s engagement at the CEE Celgene Patient’s Partners Summit
107.63 zł (PLN)
Polish Patients Federation
- Support to attend the CEE Celgene Patients’ Partners Summit
760.14 zł (PLN)
ONKOCAFE Foundation
- Support to attend the CEE Celgene Patients’ Partners Summit
380.07 zł (PLN)
Myeloma Patients Europe
- Engagement speakers’ fee at the CEE Celgene Patients’ Partners’ Summit
€ 1,909.45 - Support to attend the CEE Celgene Patients’ Partners Summit
7,130.31 zł (PLN)
European Patients’ Forum (EPF)
- Engagement speaker fee at the CEE Celgene Patients’ Partners Summit
€ 484.07 - Support to attend the CEE Celgene Patients’ Partners Summit
736.71 zł (PLN)
The Patvocates
- Engagement speakers’ fee at the CEE Celgene Patients’ Partners Summit
€ 10,332.35 - Support to attend the CEE Celgene Patients’ Partners Summit
4,902.78 zł (PLN)
Fundacja Carita im. Wiesławy Adamiec
- Shared Decision Making Campaign
20,000 zł (PLN)
Fundacja Carita – Żyć ze szpiczakiem (Carita Foundation – Living with myeloma)
- Patients’ Partners ImpactHeme Award program
20,000 zł (PLN)
Fundacja EuropaColon Polska
- Patients’ Partners Impact Panc Award program
20,000 zł (PLN)
Portugal (2019)
Associação Portuguesa Contra a Leucemia – APCL
- Project “Casa Porto Seguro”
€ 6,000 - Clarification and debate session at Culturgest
€ 2,500
Europacolon Portugal – Associação de Luta Contra o Cancro do Intestino
- Support Pancreatic Cancer early diagnosis – National Pancreatic Cancer Awareness Action
€ 10,000
Associação Portuguesa de Leucemias e Linfomas (APLL)
- Consultation fees for review of Celgene clinical trial lay summaries
€ 180
Russian Federation (2019)
Inter-regional public organization for patients with hematological diseases Mercy Bridge
- 3 schools for patients with oncohematological diseases;development and maintenance of mdspatient.ru website; publication of the “Chronic Myeloproliferative Diseases” brochure
₽ 990,000 (RUB)
National Association of the organizations for patients with rare diseases “Genetics”
- 1 regional round table (Leningradskaya region).
₽ 300,000 (RUB)
All-Russian public organization of disabled people «Russian Society of
- Hematology “SODEJSTVIE” (RSH «SODEJSTVIE»)
Round table in Leningrad region; the 14th Annual All-Russian Forum of Patients with Oncohematological Diseases “New Horizons”
₽ 900,000 (RUB)
RUSSIAN PATIENTS ASSOCIATION
- Patients’ consultations on legal issues of medical and social assessment; patients’ schools; hotline for legal assistance in right to health protection, the X Russian Congress of Patients, (Moscow November 28 – December 1, 2019).
₽ 600,000 (RUB)
Interregional Charitable Public Organization “Skin and Allergic Diseases”
- Support for Educational events
₽ 660,000 (RUB)
Serbia (2019)
National Organization for Rare Diseases Serbia
- Support for 4 different city Medical education meetings for HCP in Serbia
€ 3,000
Slovakia (2019)
Spoločnosť psoriatikov a atopikov SR
- Support for the preparation, printing and dispatch of published newsletter, “Skin Day”, “vzoprisapsoriaze.sk” – patient education, PR campaign, World Day of Psoriasis – Day of Open Doors in Spa Smrdaky
€ 23,000
Združenie pacientov s hematologickými malignitami
- Education of patients with hematological diseases, Creating the web application “Social Security Benefits Calculator”, Ambassadors of patient organization
€ 9,882 - CEE PATIENTS’ PARTNERS SUMMIT
2,980 zł (PLN)
Slovak Myeloma Society (SMyS)
- Support for the educational event “Safety of Multiple Myeloma treatment” 8th of June in Levice, Slovakia
€ 1,371\ - “School of Myeloma for patients 2019” and “Myeloma Day 2019”; 9/2019, Slovakia
€ 6,000 - CEE PATIENTS’ PARTNERS SUMMIT, Warsaw
3,738 zł (PLN)
NIE Rakovine o.z.
- CEE PATIENTS’ PARTNERS SUMMIT, Warsaw
13,241 zł (PLN)
ONKOINFO o.z.
- The Onkoinfo web portal arose from the need to create a unified and trustworthy source of information for patients.
€ 10,000
Slovenia (2019)
Association of Patients with Blood Diseases
- Support to attend the CEE Celgene Patient’s Partners Summit in Warsaw
9,776 zł (PLN) - Financial support for issuing the booklet “Rare Diseases – Ninth Edition”.
€ 1,000
Slovenian Association of Lymphoma and Leukaemia Patients
- Support to attend the CEE Celgene Patient’s Partners Summit in Warsaw
7,456 zł (PLN) - Financial support for programme for patient with blood cancers the comprehensive rehabilitation programme
€ 5,000 - Engagement Speaker’s fee at the CEE Celgene Patient’s Partners Summit
€ 271.05
Zdruzenje EuropaColon Slovenia
- Patients’ Partners Impact Panc Award Program
$ 20,000
Spain (2019)
Sweden (2019)
Blodcancerförbundet
- Participation roundtable meeting on Patient Blood management
€ 829.98 - Patient Preference Survey
$ 20,000 - Myelomdagen 2019
43,325 kr (SEK) - International Lymphoma Day
7,780 kr (SEK) - The way to a deep treatment response
94,500 kr (SEK) - Pricing principles
44,900 kr (SEK) - Swedish Chronic Blood disease Day
24,375 kr (SEK)
Nätverket mot cancer
- World Cancer Day 2019
33,375 kr (SEK)
Psoriasisförbundet
- Psoriasisting Västra Götaland 2019
10,000 kr (SEK)
Swedish Blood Cancer Association
- Patients’ Partners Impact Heme Award Program
$ 20,000
Switzerland (2019)
MKgS – Myelom Kontaktgruppe Schweiz
- Support Disease Awareness Press Conference in MM
17,500 Fr. (CHF) - Support of Anniversary Meeting
5,000 Fr. (CHF) - Support of MKgS Rebranding
2,000 Fr. (CHF) - Support Publication Patient Survey Results
30,000 Fr. (CHF) - Disease Awareness
8,000 Fr. (CHF)
MPN Patientenunterstützungsverein Schweiz
- Patient Education Events at Hospitals
10,000 Fr. (CHF) - Medical project
30,000 Fr. (CHF)
My Survival Story
- Support of Community Management
7,000 Fr. (CHF)
SKS – Stiftung zur Förderung der Knochenmarkstransplantation Schweiz
- Support of children (patients) event
8,000 Fr. (CHF)
Schweizerische Psoriasis & Vitiligo Gesellschaft SPVG
- Support of Public Disease Awareness Campaign
105,697 Fr. (CHF) - Support of Public Disease Awareness
8,300 Fr. (CHF) - Support of Patient Education Activities
5,000 Fr. (CHF)
Rheumaliga Schweiz
- Support of Patient Education Activities
10,000 Fr. (CHF) - Support Update Diagnosis Tool PsA
10,000 Fr. (CHF)
lymphome.ch
- Support of Patient Education Activities
13,000 Fr. (CHF) - Disease Awareness
5,900 Fr. (CHF)
Europa Donna Schweiz
- Support Patient Congress
3,500 Fr. (CHF)