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.
The Leukaemia Foundation is the only Australian charity helping those with leukaemia, lymphoma, myeloma, MDS and related blood disorders survive and live a better quality of life.
Each day, another 35 Australians are diagnosed. Although improved treatments and care are helping more people survive, sadly someone loses their life to blood cancer every two hours. Blood cancer is the third most common cause of cancer death in Australia, claiming more lives than breast cancer or melanoma.
Each year, the Leukaemia Foundation helps hundreds of 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.
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. The Leukaemia Foundation gives those impacted by blood cancer a strong voice, advocating for change and ensuring all Australians who need them have easy access to the very best blood cancer treatments.
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).
Objectifs sont:
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:
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.
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.
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:
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:
It is our aim to help MDS-patients and their families to advocate for 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.
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.
Sarah Liptrott is a Clinical Research Nurse in the Division of Haematology/BMT at the IEO. She graduated from Liverpool University with a Bachelor of Nursing (Hons), and obtained her Masters Degree at Staffordshire University. Throughout her career, Sarah has specialised within oncology, working within surgery and medicine as well as chemotherapy units. In her role as Clinical Nurse Specialist she developed nurse led clinics and implemented nurse prescribing into the haemato-oncology field. She has worked as Clinical Trial Team Leader responsible for the research team and achievement of UK national targets. Sarah has authored or co-authored numerous articles in high-quality scientific journals as well as being an invited reviewer. Her educational developments include BMT training/chemotherapy/clinical trials in both UK and European settings. She has served on many committees including the European Group for Blood and Marrow Transplantation Nurses Group Research Sub Committee and is a member of the RCN – Cancer Forum and Haematology & BMT Forums.
The application is divided into 2 main areas:
1. Overview
2. Details
1. Overview
For each country for which data is already available there is an
icon on the world map. 
Clicking on an icon opens a window with a country-specific country-specific overview of MDS therapies and their availability, authorisation and and reimbursement.
This overview is interactive and detailed information is displayed by moving the mouse. Under the country name there is a (pink) reference to the health insurance system (if known) in this country.
Ten possible MDS therapies are listed below. In front of each therapy are 3 coloured dots. If you move the mouse over one of the dots, further explanatory information appears.
The first dot shows the availability in a country. Red stands for not available, green for available. Yellow means conditional availability and a grey question mark means “no information”.
The second dot indicates the marketing authorisation for MDS in the respective country. Red stands for not authorised, green for authorised and yellow for e.g. not yet authorised but available as part of a study or off-label.
The third point indicates whether the costs will be covered by the healthcare system: red indicates no cost coverage, green indicates cost coverage and yellow indicates conditional cost coverage, e.g. only in characteristic cases if other therapies were not successful.
The map can also be displayed on mobile devices, but the detailed information (mousover) cannot be displayed.
2. Detail
Information for each individual therapy can be called up on the detailed map and displayed in the individual colours on the world map. This makes it possible to determine at a glance the access options for a therapy in all the countries covered.
To do this, select a therapy from the selection bar:
After selecting a therapy, the availability of a therapy is displayed in colour for each country (red stands for not available, green for available. Yellow means conditional availability and a grey question mark means “no information”). If a country is not highlighted in colour, no information has yet been determined.
In the top right-hand corner there is a button to show the show the layer menu:
By ticking the checkbox, the other levels Market authorisation and Cost absorption can be shown or hidden. The access options per country are also indicated here by the colours.
Market approval: (red = not approved, yellow = conditionally approved, e.g. for other diagnoses, green = approved, grey = no information found)
Cost coverage: (red = no cost coverage, yellow = partial cost coverage, green = general cost coverage, grey = no information found)
