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MDS platform Switzerland: a group of LYMPHOME.CH Patientennetz Schweiz

lymphome.ch Patientennetz Schweiz is a non-profit, all volunteer led organisation which was formed in 2001 and became a formal Association in 2005. Our main objective is to provide information and give support and guidance to patients and their families – by telephone and online.

We want to raise the Awareness of MDS in Switzerland and to connect MDS patients for information and experience exchange and give emotional support to patients, their relatives and friends during a life-stage characterized by illness and insecurity and to offer them this platform.  We provide MDS patients and their relatives with information booklets.

Our services:

  • Patient support in coping with and living beyond lymphoma. (by Telephone, Email, in person)
  • Patient support groups in different Swiss regions: 
  • Production and distribution of information material (booklets, flyers) about different lymphoma types and CLL, Cutaneous lymphoma and MDS. ·      
  • INFO Lymphome.ch
  • Website lymphome.ch
  • Experience and information exchange with other patient organisations in the field in order to expand the network and join forces.
  • Educational symposium like on the occasion of WLAD Organisation of patient symposiums in order to strengthen Awareness about the disease types
  • Participation in advisory boards and medical events

The following MDS information booklets from our German friends are available: 

Suomen Syöpäpotilaat ry – Association of Cancer Patients in Finland

The Association of Cancer Patients in Finland

The Association of Cancer Patients in Finland is a non-governmental organisation founded in 1971. The Association supports cancer patients and provides information about cancer. It is a member organisation of the Cancer Society of Finland and has a long tradition in patient advocacy and provides a general patient helpline and a chat/email service.

The Association coordinates 20 patient networks, including a network for MDS patients, which offer peer support to cancer patients and their families. Some of the association’s concrete work includes producing and distributing information booklets and videos, advocating for best possible treatment for cancer patients, arranging events for patient networks and managing Facebook groups dedicated to the different networks.

Suomen Syöpäpotilaat ry

Suomen Syöpäpotilaat ry (SSP) on valtakunnallinen syöpäpotilaiden etujärjestö, jonka tavoitteena on parantaa syöpäpotilaiden ja heidän läheistensä elämänlaatua. Yhdistys on Suomen Syöpäyhdistyksen jäsen ja osa Syöpäjärjestöjä.

Yhdistys tuottaa luotettavaa tietoa syöpäsairauksista sekä niiden hoidosta ja ylläpitää kattavaa valikoimaa potilasoppaita. SSP koordinoi yhteensä 20 Facebookissa toimivaa syöpäkohtaista potilasverkostoa, joista yksi on suunnattu MDS-potilaille ja heidän läheisilleen. Potilasverkostot tarjoavat mahdollisuuden monimuotoiseen vertaistukeen. Yhdistys ajaa syöpäpotilaiden etuja, järjestää potilastapahtumia sekä jakaa tietoa syöpäsairauksiin ja niiden hoitoon liittyen.

TAMID – The Israeli Association for Myelodisplastic Syndrome

The founders of TAMID are patients, family members and leading haematologists from several medical institutions in Israel, all volunteering to pursue the vision of improving MDS patients’ quality of life.

We support MDS patients and their families by:

  • Providing approachable information, intended for those without a medical background.
  • Enabling personal support to patients and their families, on a voluntary basis, within the community.
  • Developing and promoting the awareness to the disease within the public and the medical teams.
  • Funding revolutionary medical treatments which are currently inaccessible to patients, including new treatments as well as protocols used for other haematological diseases that are believed to be effective in MDS, and create a pedestal for the discussion about the inclusion of these treatments in the public health insurance.

We are committed to promote and enhance the collaboration between various medical institutions, to enable access to international trials and promote and implement cutting-edge treatments.

עמותת ת.מ.י.ד – תסמונת מיאלודיספלסטית
מקימי האירגון, כולם מתנדבים, התקבצו לעשייה משותפת לקידום ענינם, רווחתם ואיכות חייהם של חולי תסמונת מיאלודיספלסטית ובני משפחותיהם
מטרת חברי האירגון היא לתמוך בחולים ובני משפחותיהם, באמצעות
הנגשת מידע נוח, המיועד לאנשים שאינם מומחים במקצועות הרפואה
תמיכה אישית בחולים ובני משפחותיהם, על בסיס התנדבותי, במסגרת הקהילה
פיתוח וקידום המודעות למחלה בקרב הציבור וצוותי רפואה מקצועיים בקהילה
מימון לצורך פתיחת האפשרות לטיפולים באמצעות תרופות חדשות, או יישום טיפולים תרופתיים ממחלות אחרות לצורך הטיפול במחלה והכללת טיפולים אלו בסל התרופות. האירגון יפעל לקידום שיתוף הפעולה בין המרכזים הרפואיים בישראל, על מנת לקדם את מקומה של הקהילה הרפואית
המקצועית הישראלית, ובכך לאפשר קידום וחשיפה ליבוא ויישום של טיפולים חדשים ופורצי דרך עבור החולים

DIAGNOZA LEUKEMIE, z. s.

DIAGNOZA LEUKEMIE, z.s. is a patient-governed society supporting patients with leukemias and
blood malignancies and their family in the Czech Republic. Evolving from a chronic myeloid
leukemia support organisation – Diagnoza CML (2006-2014) and expanding its activities while
following its mission:

  • source of disease and treatment-related knowledge for patients and their caregivers
  • platform for patients’and family members’ socialising (Regional meetings)
  • connecting patients to experts and improving doctor-patient dialogue
  • improving patients’ legal empowerment
  • representing patients’ perspective in debate with other stakeholders within the healthcare
    system
  • activities at international level

DIAGNOZA LEUKEMIE, z.s. je pacienty řízený spolek na pomoc pacientům s leukemiemi a
zhoubným onemocněním krvetvorby a jejich rodinným příslušníkům v roli pečovatelů, působící v
České republice. Původní organizace podporující pacienty s chronickou myeloidní leukemií
(Diagnóza CML, 2006-2014) rozšířila svoji činnost při zachování své mise:

  • jakožto zdroje informací o onemocnění pro pacienty a jejich příbuzné v roli pečovatelů
  • poskytování příležitostí k vzájemné výměně zkušeností mezi pacienty (Regionální setkání)
  • napojení na odborníky a zlepšování dialogu lékař-pacient
  • zlešování právního povědomí pacientů
  • hájení zájmu pacientů v debatě se všemi zainteresovanými stranami v oblasti zdravotnictví
  • činnost na mezinárodním poli

Magyar Onkohematológiai Betegekért Alapítvány (MOHA) – Foundation for Hungarian Oncohaematological Patients

Sadly, the Foundation for Hungarian Oncohematology Patients (MOHA) has now ceased its activities, due to lack of funding. The MOHA operated for seven years and provided much needed support to adult hematopoietic patients, including mental health care and credible disease information in Hungary. The MOHA is grateful for the all the stakeholders and volunteers who supported them over the years – their work has not been in vain. Thank you to Ibolya for the many years of collaboration with the MDS Alliance.

The MDS Alliance would be keen to provide guidance and support to those interested in establishing a new support group that serves patients in Hungary, please contact us if you are interested.

Associazione Italiana Pazienti con Sindrome Mielodisplastica (AIPaSiM)

AIPaSiM is a patient-governed society supporting patients with MDS in Italy
Our mission is :

  • to be a source of disease and treatment-related knowledge for patients and their caregivers
  • to be a platform to connect patients and family members (also by organizing local and national meetings)
  • to connect patients to experts clinicians and improving doctor-patient dialogue
  • to represent patient perspective in debate with other stakeholders within the national healthcare system

Fax number +39 0287152199

Inter-regional public organization for patients with hematological diseases Most Miloserdiya (Mercy Bridge)

Our goal

To help patients with hematological diseases, including: protecting the rights and legitimate interests of hematological patients, obtaining medical, information, psychological, social, financial, legal and other types of assistance.

Our activities

  • Focusing attention of federal and regional authorities and the public on the problems of patients with hematological diseases;
  • Assistance to patients with hematological diseases in obtaining timely medical assistance and the necessary drug provision guaranteed to be financed by government agencies;
  • Information activities related to problems and achievements in the field of hematology: organizing and holding conferences, round tables, seminars, patient schools, consultations;
  • Informing patients with hematological diseases on issues related to the disease of hematological patients and protection of their rights and legitimate interests: publishing paid and unpaid basis brochures, books, booklets, bulletins, reports, newspapers, magazines and other printed materials, filming and distributing video materials. Distributing information materials through your own site and partner sites.
  • Organization of volunteer movement in order to provide feasible assistance in caring for hematological patients, providing spiritual, psychological and other forms of support;
  • Involvement of philanthropists in Russia and abroad to support hematological patients and targeted use of material and other assistance for the needs of patients.

Межрегиональная общественная организация помощи пациентам с гематологическими заболеваниями «Мост Милосердия»

• МОО помощи пациентам с гематологическими заболеваниями «Мост Милосердия» оказывает юридическую, информационную, психологическую поддержку пациентам с онкогематологическими и гематологическими заболеваниями, занимается защитой их законных интересов и прав , созданием информационных порталов, ориентированных на больных с данным видом нозологий, проведением донорских акций по сбору цельной крови и рекрутингом потенциальных доноров в поддержку развития Российского национального регистра доноров костного мозга, проведением пациентских школ и вебинаров, задача которых: информирование пациентов об их заболевании, возможном возникновении осложнений, методах их предупреждения, о правах пациентов и способах их реализации. Большое внимание уделяется волонтерской работе в пропаганде донорства цельной крови, компонентов крови и костного мозга, подготовке и проведении донорских акций, пациентских школ, благотворительных концертов для больных с тяжелыми заболеваниями крови. МОО помощи пациентам с гематологическими заболеваниями «Мост Милосердия» является членом всемирной организации пациентов с лимфомой “Lymphoma Coalition”, организации, объединяющей пациентов Европы с лимфомой “Lymphoma Coalition Europe”, членом европейской организации пациентов с множественной миеломой «Myeloma Patient Europe”, членом глобальной организации пациентов с миелодиспластическим синдромом “MDS-alliance”.

  • Председатель Правления Оксана Владимировна Чирун
  • Тел: +7 (926) 108-82-81
  • Адрес электронной почты: oksana.chirun@gmail.com

Leukaemia & Blood Cancer New Zealand

Since 1977, our work has been made possible through our fundraising events and the generous support we receive from individuals, companies, trusts and grants. We do not receive government funding.

Funding goes to our core services: Patient Support, Research, Information, Awareness & Advocacy

We aim to provide support where and when it is needed most. Our free and personalised services range from just having someone to talk to in our Support Services team, to disease-specific information and resources.

The suddenness with which these diseases strike can often put enormous financial strain on people. To those experiencing difficulties we may be able to offer support including food or petrol vouchers, or help with paying utility bills. Each case is assessed on an individual basis.

LBC is committed to finding better treatments and cures. We are the only dedicated funder of haematology research in New Zealand. Annually, we provide travel grants to health professionals, including scientists, clinicians, nurses and laboratory staff to attend local and international meetings, keep up to date with the latest advancements and conduct vital research.

Linfomas Argentina

Linfomas Argentina es una asociación civil sin fines de lucro de pacientes y familiares de pacientes con linfoma, mielofibrosis y síndromes mielodisplásicos en la Argentina.

Qué servicios brindamos:

  • Contención y orientación a pacientes y familiares, brindándoles información, respondiendo consultas y orientándolos acerca de los diferentes tipos de linfoma.
  • Orientación e información general acerca de los tratamientos disponibles, siempre incentivando y haciendo hincapié en la consulta al médico personal.
  • Realización de conferencias, charlas y eventos informativos para pacientes, familiares y profesionales del área de la salud, buscando valorizar y humanizar la relación médico-paciente para hacer más llevaderos los tratamientos.
  • Organización de encuentros y reuniones para pacientes y familiares.
  • Organización de campañas nacionales de concientización acerca de los linfomas
  • Intercambio de experiencias e información con otras asociaciones de pacientes de modo de potenciar y aunar esfuerzos y ampliar las redes de divulgación de información para llegar a la mayor cantidad de gente posible
  • Participación en eventos médicos
  • Elaboración y distribución de material didáctico e informativo acerca de los linfomas de fácil comprensión.
  • Asesoramiento y guía a pacientes y familiares para que los mismos puedan tener acceso a los tratamientos disponibles.

Lymphomas Argentina is a non-profit civil association of patients and relatives of patients with lymphoma, myelofibrosis and myelodysplastic syndromes in Argentina.

What services we provide:

  • Containment and guidance to patients and relatives, providing information, answering questions and guiding them about the different types of lymphoma.
  • Guidance and general information about available treatments, always encouraging and emphasizing consultation with the personal physician.
  • Conducting conferences, lectures and informative events for patients, family members and professionals in the health area, seeking to enhance and humanize the doctor-patient relationship to make treatments more bearable.
  • Organization of meetings and meetings for patients and relatives.
  • Organization of national awareness campaigns about lymphomas
  • Exchange of experiences and information with other patient associations in order to strengthen and join forces and expand information dissemination networks to reach as many people as possible
  • Participation in medical events
  • Preparation and distribution of educational and informative material about easy-to-understand lymphomas.
  • Advice and guidance to patients and family members so they can have access to the available treatments

Hematon Foundation

Hematon is a patient advocacy group for patients with blood cancers, including MDS, lymphomas and stem cell transplantion and their caregivers. We provide information about the diseases (website, magazine, booklets, meetings with hematologists), offer peer support (face-to-face, by telephone, by e-mail, forum) and we are advocates for better care, access to all available medicines, reimbursment of medical costs, and we promote patient empowerment.
Hematon is an organisation of volunteers (patients and caregivers).

Hematon is de patiëntenorganisatie voor patiënten met een hematologische-oncologische aandoening en/of mensen die een stamceltransplantatie hebben ondergaan. Ons doel is hen te ondersteunen bij alle aspecten die het leven met en na kanker met zich meebrengt. We zijn er ook voor naasten en donoren van patiënten. Lotgenotencontact, belangenbehartiging en informatievoorziening zijn onze speerpunten. Hematon bundelt kennis en ervaring. De organisatie bestaat dan ook voornamelijk uit betrokken en (ervarings-)deskundige vrijwilligers.

Hematon komt tegemoet aan drie behoeften bij patiënten: weten, delen en ontmoeten. We maken het mogelijk dat patiënten kennis en ervaringen kunnen delen met elkaar en met deskundigen en zorgen voor ontmoetingen tussen patiënten. We geven daar op verschillende manieren invulling aan.