| Name: | Stichting MDS Alliance |
| RSIN: | 867192707 |
| Contact: | Stichting MDS Alliance Kabelweg 57 1014 BA Amsterdam The Netherlands |
| Mail: | secretariat@mds-alliance.org |
Mission and Objectives
The MDS Alliance is an international umbrella organisation that aims to ensure patients with Myelodysplastic Syndromes (MDS) have access to the best multiprofessional care, regardless of where they live. Representing more than 40 patient advocacy groups around the world, we campaign and collaborate to amplify the voice of smaller organisations and help patients and health professionals to establish new patient support groups where they do not exist.
Our shared voice as a group with a common cause places us in a unique position to offer support via education, resources and knowledge of MDS globally.
To achieve this, the MDS Alliance’s mission is based on three pillars:
- Information & Resources
- Guidance & Advice
- Representation & Advocacy
Information & Resources
The MDS Alliance provides its members, patients and healthcare teams with the resources and the latest information about MDS and its various forms. This includes current treatment options, international projects and events of interest to the whole community.
Guidance and Advice
The MDS Alliance shares best practices and skills amongst its membership and provides a forum for advice and guidance on a wide range of issues affecting patients suffering from MDS, such as cost effectiveness of medicines and treatments, fertility issues and more.
Representation and Advocacy
To ensure a lasting and sustainable difference, there needs to be a strong voice for all MDS patients worldwide – and the MDS Alliance strives to be this voice. It does so in three ways:
Organisational Structure:
The governance of the MDS Alliance Foundation consists of the Steering Committee, the Board of Directors and the Executive Director.
Members of the Steering Committee:
- Jacqueline Dubow (Chair)
- Cindy Anthony (Member)
- Blerina Shala (Member)
- Gereon Mänzel (Co CEO)
- Debbie Hickman (Co CEO)
- Ashley Moncrief (Member)
Board of Directors:
- Gereon Mänzel (1. Director)
- Debbie Hickman (2.Director/Treasurer)
The members of the Steering Committee and the directors do not receive any remuneration for their activities. Expenses incurred, such as travel costs, may be reimbursed.
Executive Director:
- Fisnik Shala
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