Lymphome.ch Patientennetz Schweiz ist eine gemeinnützige, ehrenamtlich geleitete Organisation, die 2001 gegründet wurde und 2005 zu einer formellen Vereinigung wurde. Unser Hauptziel ist es, Informationen über die Krankheit und alle Lymphomtypen bereitzustellen und Patienten und Angehörige zu unterstützen und zu begleiten, wenn es am meisten benötigt wird.
Wir möchten den Bekanntheitsgrad des Myelodysplastischen Syndroms MDS in der Schweiz steigern und MDS-Patienten für einen Informations- und Erfahrungsaustausch vernetzen. Ebenso Patienten, Angehörige und Freunde in einer durch Krankheit und Unsicherheit geprägten Lebensphase emotional unterstützen und ihnen dafür diese Plattform bieten.
Unsere Dienstleistungen beinhalten:
- Beratung, Unterstützung bei der Krankheitsbewältigung (per Telefon, Email, persönlich)
- Gesprächsgruppen in verschiedenen Schweizer Regionen.
Diese Treffen geben Lymphompatienten und ihren Angehörigen die Möglichkeit, sich aktiv und konstruktiv mit der Krankheit auseinanderzusetzen, in gegenseitigen Gesprächen zu lernen, die Krankheit besser zu verstehen, und trotz Krankheit die Lebensqualität und Freude zu bewahren.
- Erstellung und Verteilung von Informationsmaterial (Broschüren, Flyer) über verschiedene Lymphomtypen sowie CLL, Hautlymphome und MDS.
- INFO Lymphome.ch
- Website lymphome.ch
- Erfahrungs- und Informationsaustausch mit anderen Patientenorganisationen im hämatologischen Bereich, um das Netzwerk zu erweitern und Kräfte zu bündeln.
- Organisation von Patientensymposien, wie anlässlich des Welt-Lymphom-Tages WLAD, um das Bewusstsein für die Krankheit zu stärken
- Teilnahme an Kongressen, medizinischen Veranstaltungen und Beiratstätigkeit
Wir stellen MDS-Patienten und deren Angehörigen Informationsbroschüren zur Verfügung. Folgende Broschüren unserer deutschen Freunde sind bei uns erhältlich:
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 (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.
We will work hard to give blood diseases and cancer patients a better environment.
The crisis of losing one’s health can come without warning. It brings pain, despair and misery to our lives. However, there is no crisis that cannot be overcome.
Today, with the development of new medicines, the rate of cure and the quality of life of blood cancer patients is getting higher and higher. Therefore, sharing the experiences of patients with the same disease brings seeds of hopes for blood cancer patients and their families.
The Korean Society of Blood and Cancer is a non-profit organization that helps patients to cope with the disease 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. We make periodical publications and distribute them free of charge. We take part in international organizations and conferences in the USA, Japan, Europe, etc. looking at keeping up-to-date and provide better support programs.
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. 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
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.
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
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
