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MM & WM Patient Association in the Netherlands: Supporting Patients & Advocating for Progress

Founded in 1983, the MM & WM Patient Association in the Netherlands aims to support patients, distribute disease information, advocate for healthcare advancements, and stimulate research. With over 1600 members, the association offers patient support groups, informational resources, advocacy efforts, and fundraising for research projects. The treatment protocol for MM patients in the Netherlands includes various therapies depending on age and health conditions. Visit us to learn more!

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MM & WM Patient Association in the Netherlands: Supporting Patients & Advocating for Progress

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  1. MM and WM Patient Association, the Netherlands Introduction Aims Activities MM Treatment protocol By Lia van Ginneken Vice-chair CKP Secretary EMP

  2. MM&WM Patient Association • Founded in 1983 • More than 1600 members, - 900 MM patients - 250 WM patients - others are relatives and supporters • Funded by the government (Ministry of Health ) and Cancer League (KWF) • Member of Dutch umbrella organisations and EMP, ECPC, Eurordis

  3. Organisational structure Membership organisation Governing board: 8 members/4 MT Voluntary staff: appr. 50 (incl. 25 support group leaders)

  4. Organisational structure/cont. Meetings: - Board: 4 times/year - MT:4 times /year - Board-Support group leaders: 2 times/year - AGM yearly E-mail and tel. contact

  5. AIMS To support the interest of MM and WM patients through: 1. Patient support contacts 2. Distribution of information on the diseases 3. Patient advocacy 4. Stimulation of research

  6. Activity 1. Patient support contacts * Patient support groups • 19 support groups • 25 support group leaders • Meetings twice /year: invite spekers or socialise * Telefoon contacts/helpline * Talk list on the web/e-mail comm. * Yearly Symposia (e.g.AGM)

  7. Activity 2: Distribution of Information on the diseases Publications: • Patient handbook • Quarterly newsletter • Information for health professionals Web-site: • Information • Talklist/forachildren of patients young patients

  8. Activity 3: Patient advocacy • Stimulate the availabilty of treatments and medication for all • Stimulate implementation of new medication • Safe RMP when needed • Input in clinical trial • Quality of care (hospitals) • Symposia (National and International)

  9. Activity 4: stimulate research • Fundraising: ‘Stimulans’ to fund research projects e.g. Doctors’delay Information need of MM patients (Univ. Maastricht) Patient history/experience • Contacts with industry a.o.

  10. Treatment protocol MM The Netherlands For patients outside trials

  11. First line treatment < 65: Intensive therapy with: 3 cycles of Thalidomide, Adriamycine and Dexamethason Followed by: Cyclophosphamide, Adriamycine and Dexamethason + stem cell harvest Consolidation therapy with: High dose Melphalan + autologous SCT

  12. First line treatment > 66 First choice: Melphalan, Prednison +Thalidomide (MPT) In case of renal failure: Bortezomib +/- Dexamethason Very frail patients: Start corticosteroids Maintenance therapy can be considered with: Thalidomide

  13. Refractair or relapse Either: Bortezomib + dexamethason, min 6 cycles Or: Lenalidomide + dexamethason, min 6 cycles Or: Thalidomide + dexamethason If needed: low dose cyclophosphamide can be added.

  14. Choice for second line therapy is made on individual basis depending on: • Preceding treatment • Side effects like polyneuropathy, kidney problems, trombose risks etc.

  15. Supportive treatment • Bisfosfonates (APD iv or Clodronate oral) • Erythropoietine (in case of anemia) • Antibiotics (profylaxes) • (IV immunoglobuline)

  16. Thank you for your attention! Questions?

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