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It is our aim to help MDS-patients and their families to advocate themselves. What we want is to provide information on the disease, support patients to find MDS-specialists across Germany and to gain influence in health-related committees.
We offer networking service especially for newly diagnosed patients, who would like to share their experience with fellow sufferers. You can contact us by telephone line or participate in our Blog. We wish to raise awareness of MDS to patients, carers and health care professionals across Germany.
We do that through organizing patient information days, through our website www.mds-patienten-ig.org and through printed material. On behalf of the MDS-community we equally work on European and international basis by regular, active attendance at specialist hematological congresses and by collaboration with MDS-related patient organizations as well as working-groups such as MDS-Alliance
Die MDS Patienten-Interessen Gemeinschaft, Deutschland ist eine Untergruppe der Leukaemiehilfe RHEIN-MAIN e.V.
Es ist unser Ziel MDS-Patienten und deren Angehörige so zu unterstützen, dass sie in der Lage sind ihre Interessen zu vertreten. Wir möchten über die Erkrankung informieren, die Patienten unterstützen deutschlandweit Kontakt zu den entsprechenden MDS-Spezialisten zu knüpfen und unseren Einfluss in wichtigen gesundheitspolitischen Gremien geltend machen. – Wir bieten ein Netzwerk, vor allem für neu diagnostizierte Patienten, die einen Erfahrungsaustausch mit anderen Patienten aufbauen möchten. Sie können uns über Telefon oder über Internet erreichen oder an unserem neu eingerichteten Blog teilnehmen. – Unsere Zielsetzung ist es deutschlandweit den Bekanntheitsgrad der MDS-Erkrankung unter Patienten, Angehörigen, Ärzten und medizinischem Personal zu erhöhen. Um das zu erfüllen, veranstalten wir regelmäßig Patienten- und Angehörigen Tage in verschiedenen Städten Deutschlands, pflegen unsere gut besuchte Webseite www.mds-patienten-ig.org und veröffentlichen Broschüren zu MDS. Für unsere MDS-Patienten arbeiten wir ebenfalls auf europäischer und internationaler Ebene,
indem wir regelmäßig hämatologische Fachkongresse zur Fortbildung und zu Vernetzungszwecken besuchen und dort auch unser Materialien ausstellen. Wir vernetzen uns mit anderen Patientenorganisationen und internationalen Arbeitsgruppen wie MDS Alliance.
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:
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:
Contacto : Haydee Gonzalez
Email : firstname.lastname@example.org
The Leukaemia Foundation is the only national charity dedicated to helping those with MDS, leukaemia, lymphoma, myeloma and related blood disorders survive and then live a better quality of life. Blood cancer is the third most common cause of cancer death in Australia, claiming more lives than breast cancer or melanoma.
Helping local families beat blood cancer
Each year, the Leukaemia Foundation helps more than 750 families from regional and rural Australia by providing free accommodation in our capital cities so they can access life-saving treatment at major hospitals.
Our transport service also helps thousands get to and from medical appointments, driving more than one million kilometres each year to ensure people get the medicines they need to beat their blood cancer. Thanks to its supporters, the Leukaemia Foundation is also able to provide counselling, comprehensive information, education and support programs and financial assistance to help the 60,000 Australians who are currently living with a blood cancer.
Helping Australian researchers beat blood cancer
Researchers funded by generous supporters of the Leukaemia Foundation are working tirelessly to discover safer and more effective treatments that will save lives and help people lead a better quality of life. Our $38m cancer research program has been running for more than a decade and finds the causes of blood cancer and improves the way people are diagnosed and then treated.
Email : email@example.com
Wij bieden ondersteuning aan patiënten, de partner en hun omgeving via
– informatieve bijeenkomsten,
– persoonlijk- en telefonisch contact,
– ontmoetings- en ontspanningsactiviteiten,
– een tweejaarlijkse infodag.
We provide support to patients, their partners and their environment through:
– informative meetings,
– personal and telephone contact,
– meeting and relaxation activities,
– a biennial info day.
Contacto : Luc Verbeugt
Email : firstname.lastname@example.org
The ABRALE – Brazilian Association of Lymphoma and Leukemia works across the country to democratize the treatment and quality of life of people with hematologic malignancies to guarantee universality, equity and integral service for all.
We have a multidisciplinary team with: psychologists, who assist the patient in coping with the disease, nutritionists that elaborate personalized diets, lawyers, who give information on the rights guaranteed by law and advocate for policy improvements, nurses and social workers, who clarify doubts about the diseases and a team with committed professionals that work to improve prevention, access to treatment and better outcomes continuously.
Education and Information:
We produce information material, i.e. leaflets, booklets, videos and the Abrale magazine for patients, family members and health professionals. Abrale’s website and social networks are sources of information and contact with all Stakeholders. We also provide access to the best experts at the Abrale Meeting, a biweekly event, with free lectures, and also through Chat Abrale, an online tool to connect patients and caregivers to doctors and health professionals on different issues. We also offer sophisticated on-line educational to health professionals and physicians of the country, contributing with early diagnosis and care improvement.
Research and Data Organization:
We take advantage of technology advancements to improve knowledge about oncology facts in our country.
From patients, we have our own registry and collect real world evidence . Also we use government open data and analyze them and publish in a dynamic and interactive on line plataform. Our data scientist contribute to the understanding of the oncology scenarium.
Public policy and Advocacy:
We work intensively in the area of advocacy to represent our patients before the Government. We partner with social organizations, participate in the National Health Council and events related to the theme. We collaborated to advance important laws, which greatly benefited the health system and Oncology in Brazil. Our strategy includes actions to improve public and private care in oncology , transparent and efficient use of public resources and focus on better clinical outcomes .
The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a volunteer-run organization supporting patients and caregivers across the country who are living with aplastic anemia, myelodysplastic syndrome (also called MDS or myelodysplasia) and paroxysmal nocturnal hemoglobinuria (PNH).
In addition to supporting patients and caregivers AAMAC also:
Contacto : Cindy Anthony
Email : email@example.com
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.
Contacto : Executive Director Chul Hwan Lee of KBCA
Email : firstname.lastname@example.org
We started at an information meeting in April 2007, where we asked the attendees about their expectations for a patient association. LyLe’s purpose and association’s work is based on the dialogue at the meeting.
We work on 3 main areas: Dialogue with others, information and impact on systems.
Dialogue with others
LyLe facilitates contact between patients with the same disease, shortly after diagnosis, during the course of treatment or after treatment.
We also promote dialogue between the relatives and with professionals.
We produce information about the disease, via booklets, and promote their distribution after the consultation, so that patients can keep it.
Through our website we provide updated links to find more information about the diseases.
We strive to have an impact in the health system, through our political campaigning and our direct dialogue with the health service with the aim of representing patients and their needs.
Our mission is to actively represent and promote the interests of patients in the exercise of their right to health care, leading to prolonging life and improving its quality.
We listen to patients, find answers to their questions, and help them get the best possible treatment.
We work with top Slovak hematologists and monitor current scientific work on the treatment and research of hematological diseases. All important news about haematological malignancies can be found on our website and in the information materials.
Our helpline supports patients to keep with their treatment regimen. We provide with the information and support them to get the medication right.
We provide patients with legal advice. Our website provides practical advice and guidance on how to address the financial and social difficulties caused by the illness.
We help patients to get the right treatment – on our website and in our information materials, they find detailed information on the different options for treating their disease as well as on whether this treatment is covered by health insurance companies and under what conditions.
We also put together the medical and legal arguments and represent individuals who need treatment that is not covered by their health insurance. We turn to a health insurance company and look for other solutions to mediate the treatment on behalf of patients.
Contacto : Katarina Fedorova
Email : email@example.com
The Slovenian Association of Patients with Lymphoma and Leukemia, L & L, was founded on May 15, 2007.
Email : firstname.lastname@example.org
La Asociación Española de Afectados por Linfoma, Mieloma y Leucemia fue constituida por pacientes el 8 de Octubre de 2002 y es una asociación de ámbito nacional declarada de Utilidad Pública por el Gobierno Español.
Con los años, AEAL ha comenzado a trabajar con pacientes con diagnóstico de diversas patologías oncohematológicas tales como linfoma, leucemia, mieloma, síndromes mielodisplásicos y síndromes mieloproliferativos.
Los objetivos de AEAL son la formación, información y ayuda a pacientes oncohematológicos y sus familiares; prestando asistencia telefónica, apoyo psicológico, asesoramiento jurídico, apoyo social e información para los pacientes en el diagnóstico y los tratamientos sobre sus enfermedades. AEAL está gestionada principalmente por pacientes que desarrollan su actividad en calidad de voluntarios ofreciendo información y apoyo emocional. Siendo estos servicios y actividades gratuitos para los pacientes y sus familiares.
AEAL (Spanish Group of Lymphoma, Myeloma and Leukemia patients and relatives) was constituted by patients on October 8th, 2002 and is a nation-wide association declared of Public Utility by the Government of Spain.
Over the years, AEAL has begun working with patients diagnosed with various pathologies oncohematological such as lymphoma, leukemia, myeloma, myelodysplastic syndromes and myeloproliferative neoplasms.
AEAL goals are training, information and support of oncohematological patients and their relatives providing phone assistance, psychological support, legal advice, social support and information for patients about their diseases, diagnosis and treatments. AEAL is mainly managed by patients who develop their activities as volunteers offering information and emotional support. Services and activities for patients and relatives are free of charge.
Contacto : Begoña Barragán
Email : email@example.com
The Aplastic Anemia & MDS International Foundation is the world’s leading non-profit health organization dedicated to supporting patients and their families who are living with aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases.
We are a patient-focused, patient-centered organization serving patients and families throughout the three phases of bone marrow failure diseases:
The Aplastic Anemia & MDS International Foundation provides answers, support and hope to thousands of patients and their families around the world.
Contacto : Kathleen Weis, CEO
Email : firstname.lastname@example.org
The MDS Foundation, Inc. is an international organization established in 1994 by world renowned researchers dedicated to further scientific knowledge, patient support, and education in the myelodysplastic syndromes (MDS).
The Foundation is based on the premise that international cooperation will accelerate the process leading to the control and cure of MDS. The Foundation provides research grants for scientific investigators, sponsors international working groups of scientists and physicians to further diagnostic, prognostic and treatment techniques, and disseminates information on state of the art research, clinical trials and treatments among the profesional and patient communities.
The Foundation also refers patients to its collection of ‘MDS Centers of Excellence,’ maintains an electronic fórum on its website for interaction and Support among patients, and provides educational programs for both health care professionals and patients and their families.
Contacto : Tracey Iraca, Executive Director
Email : email@example.com
L’association Connaître et Combattre les Myélodysplasies regroupe, depuis juillet 2006, des personnes atteintes de syndrome myélodysplasique et leurs proches.
L’association a l’appui du Groupe Francophone des Myélodysplasies (GFM).
Since July 2006, our association has been supporting people suffering from Myelodysplastic Syndrome and their relatives with the help of the Francophone Group of Myelodysplasia (GFM).
Our objectives are:
Contacto : Sarah Jenny
Email : firstname.lastname@example.org
MOHA has been established to help provide trustworthy information for people with hematopoietic illnesses, provide emotional support and represent patients’ interests with decision-makers.
We produce patient information leaflets and organize large-scale educational programs several times a year, as well as specific diseases support groups, where patients get the opportunity to consult expert professionals. Our goal is to strengthen trust in evidence-based medicine and to promote scientific thinking.
Our aim – beyond the dissemination of knowledge – is to provide emotional support for patients and their families going through similar situations. Within the groups, it is possible to meet with patients and carers whose example can help to cope successfully with the disease. Honest conversations can relieve anxiety due to illness and treatments. In parallel, we run virtual groups on social network sites where patients can communicate on a daily basis. These are all moderated by professionals.
The purpose of MOHA is to give patients access to the most up-to-date treatment recommended for their illness, in a predictable and transparent manner, and at the right time. While some patients are less able to act effectively to protect their interests, we can achieve success with civil pressure. As patient representatives we are working to get involved in all patient-related decision-making processes.
New therapies are constantly emerging, which give patients more chance to heal. It is important for those concerned to know about new opportunities and consult their doctor.
Contacto : Ibolya Kéri
Email : email@example.com
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:
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
Contacto : Iris Yahal
Email : firstname.lastname@example.org
AIPaSiM is a patient-governed society supporting patients with MDS in Italy
Our mission is :
Email : email@example.com
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.http://www.mdssupport.net/index.html
The Association of citizens for rare diseases LIFE WITH CHALLENGES is formed and lead by patients and families facing rare diseases. As a patient organization we advocate for patients rights, we provide information on diseases, we translate information, we connect patients and families with other patients and families with the same rare disease, we organize patient gatherings, we organize educative lectures for medical professionals, we have many activities for raising public awareness, we also have capacity building activities, activities for networking and communication with stakeholders and other activities depending on the needs of the patients and families facing rare diseases.
Здружението на граѓани за ретки болести ЖИВОТ СО ПРЕДИЗВИЦИ е формирано и водено од пациенти и семејства кои се соочуваат со ретки болести. Како организација на пациенти се застапуваме за правата на пациентите, понатаму споделуваме информации за болести, едукативни материјали, преведуваме информации на бараање на пациентите, ги спојуваме пациентите и семејствата со други кои се соочуваат со истата болести, организираме собири на пациенти, едукативни предавања за здравствени работиници, имаме многу активности за подигнување на јавната свест, активности за градење на капацитет на организацијата, активности за вмрежување и комуникација и слично зависно од потребите на пациентите и семејствата кои се соочуваат со ретки болести.
Contacto : Vesna Aleksovska
Email : firstname.lastname@example.org
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.
Contacto : Pru Etcheverry
Email : email@example.com
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.
Contacto : Jan Boonstra
Email : firstname.lastname@example.org
APCL’s mission is to contribute, at a national level, to increase the effectiveness of the treatment of Leukemias and other related hematological malignancies.
Our main objectives are:
Contacto : Carlos Horta e Costa
Email : email@example.com
We are the only group dedicated solely to MDS in the UK.
“Support, Information, Awareness and Campaigns for those affected by Myelodysplastic Syndromes”.
The majority of our committee members are either MDS patients themselves or relatives of a patient.
We were formally set up in 2008 and have two full-time employees as well as a part-time volunteer.
We are funded by donations, fundraisers and pharmaceutical grants.
We are delighted to cooperate with other MDS groups anywhere in the world – and look forward to meeting any new members to share best practices.
Our aims are:
Contacto : Sophie Wintrich
Email : firstname.lastname@example.org
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:
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:
Contacto : Jana Pelouchova
Email : email@example.com
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.