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.
- 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:
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).
- Favoriser les échanges d’information entre les patients et leurs proches à une échelle nationale et régionale.
- Favoriser la recherche sur les myélodysplasies et la mise en place de nouveaux médicaments et traitements, en liaison avec les médecins du GFM.
- Contribuer au progrès des soins et de la prise en charge des patients.
- Faciliter la relation des adhérents avec les spécialistes des myélodysplasies. Soutenir l’action du Groupe Francophone des Myélodysplasies (GFM) et collaborer avec lui.
- Maintenir une veille sur les progrès obtenus dans le monde et organiser des réunions d’information en présence de spécialistes.
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:
- Encourage the exchange of information between patients and their families at a national and regional level.
- Promote research on MDS and the introduction of new drugs and treatments, in collaboration with GFM doctors.
- Contributing to the advancement of patient treatment and care.
- Facilitate the relationship of its members with MDS specialists. Support and collaborate with the Francophone Group of Myelodysplasia (GFM).
- Keep up-to-date with the latest progress achieved around the world and organize informational meetings for patients with the presence of MDS specialists.
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