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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: 

Cancer Support Community of Kosovo

Our goals

Don’t suffer in silence – Help us help you. Formed in March 2018, at CSCK we aim to raise awareness of cancer and offer support and information to patients, families and healthcare professionals across Kosovo. We campaign to increase the quality of life and make treatments available to those affected by the condition. Our interests are blood cancers and particularly myelodysplastic syndromes. Using our networks and national and international collaborations we aim to be the biggest cancer support platform in Kosovo by 2020.

How we do it?

If you live in Kosovo and are suffering from cancer then you’ve come to the right place. We will do the following:

  • Put you in touch with fellow patients who may share their experience with you.
  • Provide you with access to a list of consultants, specializing in your condition in Kosovo and nearby countries.
  • Provide you with help and advice.
  • Help you receive the most up to date information on your condition, patient stories and current research

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.

Japan MDS patient support group (JAMPS)

Japan MDS (Myelodysplastic syndrome) Patient Support Group was established with the support of MDS patients’ families and their carers, and the International MDS Foundation with the aim of support patients and families affected by Myelodysplastic Syndrome.

Japan MDS Patient Support Group has an international information network as part of the Global Patient Support Groups of the International MDS Foundation.

We provide information related to MDS, introduce patients to the MDS Center of Excellence – certified by the International MDS Foundation – and provide support for doctors, nurses, pharmacists and patients. We also spread the latest research and new treatment options and provide information of current clinical trials.

Korea Blood Disease and Cancer Association

Korea Blood Disease and Cancer Association(KBDCA) is a non-profit organization that helps patients to cope with the blood disease and cancer through economic and emotional support and work on a variety of disease education programs to help people understand the disease and make their life better.

The goals of KBDCA are same as follows.
◦ Establishing a paradigm for sustainable and proper patient support
◦ Operation of personalized education programs and economic support programs for patients with blood diseases and cancer and their families
◦ Invigoration of academic research projects through interaction with related organizations at home and abroad
◦ Activities to promote health insurance coverage for new drugs and various advocacy activities for cancer patients, etc

KBDCA is contributing to the promotion of health and welfare by carrying out various projects
such as financial support, education & counseling programs, information support, and
overseas exchange.

KBDCA will strive to provide updated information and support for more patients and families.

KBDCA 한국혈액암협회

KBDCA는 환우분들이 경제적·정서적 지원을 통해 혈액질환 및 암에 대처할 수 있도록 돕는 비영리
법인입니다. 저희 협회는 환우분들이 혈액질환 및 암에 대해 이해하고 삶의 질을 개선할 수 있도록 다
양한 질환 교육 프로그램을 진행하고 있습니다.

KBDCA 한국혈액암협회의 목표는 아래와 같습니다. ◦ 지속적이고 올바른 환우 지원 패러다임 구축
◦ 혈액 및 암 환우 가족분들을 위한 질환별 맞춤 교육프로그램 및 경제적 지원 프로그램 운영
◦ 국내·외 관련 단체와의 교류를 통한 발전도모 및 학술연구 사업 활성화
◦ 신약·조기보험 활동 등 다양한 환우 옹호 (Advocacy) 활동

KBDCA는 혈액질환 및 암 환우분들께서 사회적인 관심과 배려 속에 조속히 완치되어 사회에 복귀할
수 있도록 경제적 지원 · 교육 · 상담 · 정보지원 · 해외교류 등 다양한 사업을 수행함으로써 보건복지
증진에 기여하고자 합니다. 저희 KBDCA는 더 많은 환우와 가족분들께 필요한 정보와 지원을 제공해 드리고자 앞으로도
끊임없이 노력하겠습니다. 연락처 : 이철환 (사무총장) / 장원영 (부장)
Tel +822 3432 0807
이메일 : bloodcancer@daum.net
www.kbdca.or.kr

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