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:
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:
- To provide a networking service through which those newly diagnosed with MDS can share their experience with fellow sufferers.
- To provide a help and advice telephone line 5 days a week.
- To organise several national patient information meetings with specialist speakers.
- To help patients create small regional support group meetings, to meet informally – or organise activities or small presentations.
- To distribute information and raise awareness of MDS among patients, carers and health care professionals across the UK.
- To provide access to a list of UK consultants, specialising in MDS.
- To develop and maintain a website, providing information on MDS, latest news or research and clinical trials and a very active Patients Forum.
- To run two Facebook pages (one public, one per invitation only) and a Twitter account.
- To fund a research activity in MDS, that will benefit patients
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.
