PRENOSIMA BILTEN MYELOMA PATIENTS EUROPE (MPE) ZA MJESEC SRPANJ 2022.

Iz pregleda vijesti MPE izdvajamo nedavno održan MPE Masterclass u Amsterdamu, o čemu smo već izvijestili, a video materijali bit će uskoro dostupni te ćete ih moći pogledati. Video snimke s intervjuima s doktorima sa Godišnjeg kongresa Europskog hematološkog udruženja (EHA), održanog prošlog mjeseca u Beču, možete pogledati u nastavku, kao i nekoliko obavijesti o raznim istraživačkim projektima. 
Predstavljene su i dvije brošure izdane u zadnjih nekoliko mjeseci: Tromboza i krvarenje te Oralna njega tijekom zračenja i kemoterapije. Brošure su na ruskom jeziku.
 
Izvor MPE
 
 
MPE Masterclass 2022

After two years of virtual Masterclasses, Myeloma Patients Europe (MPE) got together with members, healthcare professionals and supporters for our Masterclass 2022 in Amsterdam, The Netherlands, between 1 and 3 July 2022. Sessions covered the most relevant topics for patient organisations, including myeloma and AL amyloidosis updates, patient involvement in decision-making on medicines and important issues for patients such as going back to work or living well with myeloma.

Our speakers summarised for MPE the most relevant points in their session in a series of videos which will be available shortly.

We also celebrated MPE’s 10+1 Anniversary which was cancelled last year due to the COVID-19 pandemic. We were really grateful to be able to gather and cheers to 10 more years of success together!
 
 


 

European Myeloma Day Launch Event!

27 September / 15:00 – 17:00 CETJoin MPE members, the patient community, clinicians, and supporters for the launch of the first-ever European Myeloma Day! At this online event, MPE will present our research findings from the Year of Action on early diagnosis, we will hear from patients on their diagnosis experience, and we will discuss strategies and actions we can take to improve diagnosis for patients across Europe. 

Register by completing this form and save the date in your calendar!
 
EHA 2022 conference report
 

The European Hematology Association’s (EHA) annual congress (EHA 2022) is the most important haematology congress in Europe. It was held in Vienna, Austria, from 9 June to 12 June 2022 in a hybrid format. MPE attended this important scientific congress and developed a conference report to summarise the most relevant myeloma and AL amyloidosis topics presented during this meeting. MPE also interviewed leading myeloma and AL amyloidosis specialists to provide an overview of the key highlights in both diseases presented during this meeting.

Click here to find the video interviews filmed with doctors and the conference report with the most important updates.

 
Remuneration and Fair Market Value (FMV)
 
MPE is committed to ensuring that interactions between the patient community and pharmaceutical companies are clear, fair, and beneficial. As such, MPE is a member of the Patient Focused Medicines Development (PFMD) Steering Committee for a project on Remuneration and Fair Market Value (FMV), with a goal to create Global Principles and Methodology for patient remuneration and develop a digital tool to help apply standards to the calculation of fair market rates.
 
Your support is critical to driving the consultation process and the success of this project, and we are pleased to invite you to take part in this public consultation by reviewing the Activity and Expertise Framework and completing the survey.  
 
The deadline for submitting feedback in this public consultation is September 2022.
 
If you have any questions about the project or how to submit your feedback, please contact Katie Joyner at joyner@mpeurope.org.
 
SISAQOL-IMI
 
SISAQOL-IMI (Setting International Standards of Patient-Reported Outcomes and Quality of Life Endpoints in Cancer Clinical Trials – IMI) is a public-private collaborative research project under the Innovative Medicines Initiative (IMI). The project aims to generate recommendations to standardize the use, analysis, and interpretation of patient-reported outcomes (PRO) data in cancer clinical trials. 

MPE is involved in this project and recently attended the first in-person SISAQOL-IMI General Assembly where major scientific issues regarding the analysis of PRO data (e.g. patient quality of life data) and future plans were addressed. In the interviews below, find role and the activities developed per work package:

Click here to watch a video and learn more about the purpose of SISAQOL-IMI and the importance of their work for cancer clinical trials.
 
MPE member spotlight: Mercy Bridge, Russia
         
 
MPE is delighted to share some recent activities of our Russian member, Mercy Bridge. In the past few months, they published two brochures to help multiple myeloma patients:
  1. ‘Thrombosis and Bleeding’
Thrombosis and bleeding are complications that occur with multiple myeloma and can be life-threatening. Therefore, Mercy Bridge published brochures to increase awareness of these complications and educate patients and carers to identify these symptoms before they become life-threatening.
  1. ‘Oral care during radiation and chemotherapy
This brochure explains how the use of bisphosphonates in multiple myeloma patients can cause oral health problems. The brochure also includes information about proper nutrition to support good oral health and proper oral care during different periods of chemotherapy.
 
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