July 04, 2018

European Conference on Rare Diseases in Vienna, Austria

IPOPI attended the European Congress on Rare Diseases (ECRD), the ePAG Workshop in Vienna and the 4th RDI Annual Meeting that took place between 10-12 May 2018.

The ePAG (European Patient Advocacy Groups by EURORDIS) workshop, took place on May 10, bringing together all patient groups and representatives involved in the activities of each European Reference Network (ERN). The meeting outlined the achievements and the strategies for further development of ePAGs, with a focus on patient-clinician partnership. ERN patient representatives had a unique chance to exchange experiences and learn from each other on how to best engage patients and develop their activities within the ERNs.

The ECRD Congress, May 11-12, was dedicated to six main topics: 1) Structuring the research and diagnostic landscape, 2) Breakthrough medicines on the horizon, 3) The Digital Patient, 4) Quality of Life, 5) Economical perspectives of rare diseases, and 6) Global rare equity, each discussed in parallel sessions. The current EU legal framework, such as the revision of the HTA regulation, the General Data Protection regulation (GDPR); and regulatory aspects, such as patient involvement in the EMA and HTA bodies were touched upon in the sessions.

IPOPI presented a poster on its newly released patient companion mobile App ‘PIDGenius’ under the theme ‘Digital Patient’. The poster can be found here

About ERNs and patient involvement

European Reference Networks (ERNs) are networks involving healthcare providers across the European Union. They aim at tackling complex or rare medical diseases or conditions that require highly specialised treatment and a concentration of knowledge and resources. RITA-ERN is the reference network for Immunodeficiencies, Autoinflammatory and Auto-immune diseases.

Patient organisations (both members and non-members of EURORDIS) are involved in the work of ERNs, within the scope of the specific disease grouping of each ERN. Each patient organisation and ePAG mirrors the ERN grouping of rare diseases. Patient organisations and ePAGs will work collaboratively with ERN Healthcare Providers (HCPs) (full, associate and collaborative members) based on the operational criteria to be fulfilled to be an ERN and a HCP. RIPAG is the European Patient Advocacy Group for the ERN-RITA, consisting of ePAGs (Autoinflammatory and Autoimmune) and IPOPI (Immunodeficiencies).

If your NMO is interested in getting involved in the ERN activities, please contact IPOPI.

ePag meeting

IPOPI at ECRD next to the PID Genius poster

RDI annual meeting

4th RDI Annual Meeting

Delegates from 33 member organisations attended the first part of the meeting, reserved to members only. One third of the member delegates came from outside Europe: from Argentina, Brazil, Colombia, USA, Canada and all the way from India, Iran, China, Japan, Singapore, Hong Kong and South Africa.

The Membership Meeting included an Extraordinary General Assembly called by the Council to approve the legal incorporation of Rare Diseases International (RDI) among other items. Present members unanimously adopted the statutes of the new organisation and approved the Council’s decision to proceed with RDI’s legal incorporation, which will be completed before the end of the year.

The rest of the morning was devoted to the presentation of various programs that merit attention from patient groups working at international level. Of particular interest was the Conference Programme to support national or regional conferences that include an international dimension. Also, the presentation of RDI’s new role in the International Rare Disease Research Consortium (IRDiRC) was discussed. The Membership Meeting was the opportunity for members to hear and provide feedback on tools that could be of use in their advocacy work internationally.

In the afternoon, RDI members were joined by representatives from other patient groups, as well as industry and other stakeholders of the rare disease community, for a two-hour session devoted to tools, means and actions to advocate for rare diseases in the United Nations system.

For more information: https://www.rarediseasesinternational.org/