EURORDIS Membership Meeting 2012

EURORDIS Membership Meeting 2012

The EURORDIS General Assembly will be held on Wednesday, 23 May at the Management Centre Europe (MCE) Conference Centre from 9:00am to 11:00am. This is a members-only meeting.

A selection of forums and capacity-building workshops will follow the EURORDIS General Assembly. These sessions are designed to empower patients and patients’ advocates and encourage learning from each other’s experience.

No additional registration fees are charged to patients and patients’ advocates to attend these sessions.

Forums are meant to offer patient advocates an opportunity to meet, discuss and learn from each other In each session, a few patient representatives will be invited to share their experience and make a 5 min presentation followed by a 10’ Q & A

11:30 – 13:00 Forums – Learning from each other

1. Fundraising for rare disease patient groups.
2. Advocacy actions for access to treatment & medecines.
3. Creating a disease specific European Federation - Dos and Don’ts.
4. How can patient organisations address new issues of ageing in people with rare diseases?
5. EURORDIS activities at the EMA & Training programmes.
6. EURORDIS’ activities on EU and National Policies.

14:00 – 17:30 Patient Advocates Capacity-building Workshops

Capacity building workshops are 3 hours long, include power point point followed by Q&A and debates. The objective is to give patient advocates the knowledge base and tools to actively participate in working groups at a national level, helping them to work to establish and monitor National Plans and Strategies for Rare Diseases

The objective is to give patient advocates the knowledge base and tools necessary to actively participate in working groups at national level for the establishment and monitoring of National Plans and Strategies for Rare Diseases.

1. Online Communities: Why and how to successfully launch your online rare disease community for patients and families?
2. Information on medecines, Market Authorisation, pharmacovigilance: How to work with your National Competent Authorities?
3. Directive on Cross-Border Health Care: Why and how can you advocate for the implementation of the the EU directive on Cross-Border Health Care at national level to support patient mobility?
4. Centres of Expertise: What are the recommended quality criteria for Centres of Expertise? How can patients participate in the evaluation of Centres of Expertise?
5. Registries, Bio banks, Research: patients contribution to operational models of national and international initiatives.
6. Compassionate use programmes for orphan drugs.

To download the Advanced Programme click here