Welcome to Multiple Myeloma Ireland

Helping Improve Diagnosis & Improve Lives

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Welcome

Multiple Myeloma Ireland is the only charitable organisation in Ireland focused exclusively on supporting patients, families and carers with Multiple Myeloma and related conditions. Multiple Myeloma Ireland is also a member of Myeloma Patients Europe (MPE), the umbrella organisation of multiple myeloma and AL amyloidosis patient groups and associations from across Europe.

Although myeloma is the second most common form of blood cancer, it only represents 1% of cancers. On average 384 patients in Ireland are diagnosed with Multiple Myeloma each year – based on the most recent figures published by the National Cancer  Register.  Many people have never heard of myeloma, so being given a diagnosis of myeloma can be quite alarming. You and your family may have a lot of questions about myeloma: how it may affect you, what treatments you may have, and how much or how little will change in what you are able to do.  Information plays an important role in helping come to terms with a myeloma diagnosis and understanding options around treatment, care and living well with myeloma.

As a voluntary organisation we do everything we can to help patients, and their support network, to get a better understanding of their disease, and to ensure all patients get access to the best possible information, support, care, and treatment. Raising awareness about Multiple Myeloma and related conditions is core to what we do, and it is a strategic imperative for our organisation.

We don’t just provide resources and support for patients, but also for healthcare professionals – offering grants to support research to develop new treatments and improvements in clinical practice.

From diagnosis through to common complications, Multiple Myeloma Ireland is here to help you find all the information you need to help you better understand myeloma and related conditions.

As part of our fundraising and awareness campaign we are delighted to be able to share with you details of the Third Multiple Myeloma Ireland ‘Wild Myeloma Way Cycle‘ that will take place on September 15th and 16th this year. Participants will include Health Care Professionals, Multiple Myeloma Patients and families, Pharmaceutical industry members, and the general public. It promises to be an exhilarating, but challenging event, dedicated to raising awareness about Multiple Myeloma.

2024 Patient & Family Information Day

Save The Date!

2024 Patient & Family Information Day

Friday 24th May in the Rochestown Park Hotel, Co Cork

MMI is hosting its annual patient and family day on Friday May 24th @ Rochestown Park Hotel, Cork. Topics to be covered include Multiple Myeloma and AL Amyloidosis. This is a great opportunity to hear from experts in the field and meet patients and families living with MM and Amyloidosis.

Full programme to follow.

Rochestown Park Hotel, Co Cork

Latest News

Upcoming Events

at VHI Women’s Mini Marathon, 2 June 2024

VHI Women’s Mini Marathon, 2 June 2024

We hope to get 100 women, patients, caregivers, friends and family to walk, jog, or run on June 2nd 2024, in Dublin, to raise funds and awareness about Multiple Myeloma and Al Amyloidosis. Registration will open in March.

How to become involved:

  1. Register with Vhi mini marathon Vhi Women’s Mini Marathon 2024 | enter-womensminimarathon.ie
  2. The easiest option is to opt for your race number to be posted.
  3. You do not need to request a t -shirt as we will supply Multiple Myeloma ones.
  4. Please email info@multiplemyelomaireland.org and let us know you have registered.

We will need your T shirt size (XS, S, M, L, XL XXL)

If you are organising a group of walkers/runners please specify how many in the group, their names, t shirt sizes and approx. location. If you know someone linked with a Support Group or Board member let us know and we can organise a T shirt pick up through them nearer to the day.

 

Fundraising options.

Sponsor cards are available please specify quantity and we will send the link.

You can set up your own fundraising page through our fundraising platform partner Just Giving at www.justgiving.com/campaign/MMI Alternatively, if you would rather not set up your own fundraising page , but want to send a link to friends and family that people can use to donate to the MMI VHI Women’s Mini Marathon charity drive , then they can donate at the link below https://www.justgiving.com/page/multiple-myeloma-ireland-1707229839941?utm_medium=fundraising&utm_content=page%2Fmultiple-myeloma-ireland-1707229839941&utm_source=copyLink&utm_campaign=pfp-share

It can be useful if the person donating mentions you in their comments – e.g. Good luck Mary B and then you can see who is donating on your behalf.

How do you feel about the ways you receive your myeloma treatments?

Multiple Myeloma Ireland is collaborating with Myeloma Patients Europe (MPE) to recruit patients from Ireland to participate in one of MPE’s Patient Evidence projects on treatment administration in myeloma. MPE has developed a survey to explore how patients (and their carers) feel about how, where and when they receive their myeloma treatments.

The survey results will support our advocacy work in Multiple Myeloma Ireland and the development of MPE’s future work and research on this topic . The results of the survey will also be published in an MPE advocacy report.

We would really appreciate your input. If you are willing to participate, please complete the 15-20 minute survey via the link below.

https://mpe.getfeedback.com/treatmentsurvey

Please email research@mpeurope.org if you have any questions.

Recent Events

AL amyloidosis updates

Myeloma Patients Europe ( MPE) hosted a webinar to summarise the most important myeloma and AL amyloidosis updates presented at the 65th American Society of Hematology (ASH) Annual Meeting. The webinar took place on Wednesday, 17 January and was given by Dr. Faith Davies, Director of the Clinical Myeloma Programme at NYU Langone Health Perlmutter Cancer Center, New York, United States.

A  recording of the webinar is available at   https://www.mpeurope.org/what-we-do/publications/webinars-2/

European Young Myeloma Patients Group

Myeloma Patients Europe is  excited to announce the launch of Europe’s first-ever Young Myeloma Patients Group.

All myeloma patients living in Europe and are of age 55 and below are welcome to join the group.

The launch event will be held on the 8th of February from 5:00 PM to 6:00 PM CET.

 

To know more and register, click the link below

 

European Young Myeloma Patients Group – Myeloma Patients Europe (mpeurope.org)

 

 

MPE Masterclass 2023

28 – 30 April 2023 – Dubrovnik, Croatia 

Fionnuala Duffy, Niamh Murray and Ann Fleming as Multiple Myeloma Ireland Board members and patients attended the 2023 Myeloma Patients Europe Masterclass. The Masterclass comprised of plenary, breakout and panel discussions aimed at increasing the knowledge and skills of members, and discussed challenges faced by the patient community, ways to address them and sharing the latest treatment updates. Topics included Myeloma and Amyloidosis updates, fundraising for patient organisations, optimising the Myeloma pathway and the importance of physical exercise for multiple myeloma and amyloidosis patients. 

We also presented a poster on our award-winning podcast series and there was a great deal of interest from all attendees. 

The  recordings of the presentations from the  2023 and 2022 Masterclasses  can viewed in the link below.

2023 Wild Myeloma Way Cycle

Congratulations

Our 2023 Wild Myeloma Way Cycle took place on  Friday 15th and Saturday 16th of September 2023. It was a great success – thanks to all who raised funds and participated.

Patient Recruitment

Press Release

(CAR-T), CARTITUDE-5, Feb 1st 2023

 

MMI would like to inform patients that a new myeloma clinical trial for Janssen’s chimeric antigen receptor T-cell therapy (CAR-T), CARTITUDE-5, will begin in St James’s Hospital in Dublin in the new year. The trial is for people with newly diagnosed multiple myeloma for whom ASCT is not planned as an initial therapy.  

Geraldine Walpole, Chairperson of Multiple Myeloma Ireland, said: “This is a welcome development for newly diagnosed multiple myeloma patients in Ireland. Participation in the CARTITUDE-5 clinical trial may provide access to a much-needed cutting-edge treatment option. We hope this trial will ultimately contribute towards better treatment regimens for patients living with multiple myeloma.”  

Please click below button for more information on the trial

We Want You

You are invited to take part in an online survey

Award Winning Podcast

MMI is delighted to announce our Living with Multiple Myeloma Podcast Series has been awarded the Bullseye Award at the Irish Podcast Awards 2022. The Ceremony was held on September 16th 2022 at Liberty Hall, Dublin.

Our podcast series provides information and support for Irish Multiple Myeloma patients and their families. Each year in Ireland 350 new patients are diagnosed and over 2000 patients are living with Multiple Myeloma.
The series of 13 podcasts provides an overview of the patient journey, treatment options and supports available to patients and their families.

MMI are grateful to our host Maire Teresa Ni Cheallaigh, Greg @ Fuzion Communications and all our fantastic interviewees of patients and healthcare professionals for their contributions and support.

Listen To Our Podcast