The CGPP-IBMC (Centre for Predictive and Preventive Genetics of the Institute of Molecular and Cellular Biology) and the PhasAGE project are pleased to announce the organisation of a capacity building event aimed to empower the capabilities of national associations of patients with neurodegenerative and neuromuscular diseases. The event will take place on 15 September 2023, at the i3S – Institute for Research and Innovation in Health auditorium in the city of Porto.
This event aims to unite patient organisations dealing with diseases caused by alterations in the structure and function of proteins, offering a platform for sharing knowledge and experiences. It will feature guest speakers from the Ataxia-UK alliance and EuroAtaxia, two renowned organisations helping patients with ataxias, who will share ideas and recommendations on crucial topics:
- Funding for Research: How to raise funds for research and treatment development.
- Dissemination and Communication: Effective strategies for raising awareness and support.
- Volunteering: The vital role of volunteers in patient organisations.
- Challenges in Implementing and Developing Patient Organisations: How to overcome obstacles and promote sustainable growth.
The event will include interactive round tables, where participants will have the opportunity to exchange ideas with the guest speakers and between the different associations. This interaction aims to stimulate future collaborations and boost progress in building the capacity of national patient associations.
Sandra Ribeiro, coordinator of the PhasAGE project, is enthusiastic about this initiative with the special participation of Julie Greenfield, representative of EuroAtaxia and Ataxia-UK and one of the members of the project’s scientific advisory board. “Together, we can make a difference to the lives of people suffering from neuromuscular and neurodegenerative diseases. This is a unique opportunity for information sharing, capacity building, and future collaborative efforts that will contribute to the advancement of research and support for these patients,” she says.
In addition to the enriching discussions and networking opportunities, participants will also have the chance to attend the inauguration of the exhibition “A Rare Look”, an initiative co-organized by CGPP, PhasAGE and i3S together with several patient organisations. This fusion of art and science “provides a powerful and stimulating experience, deepening our understanding of these diseases”, explains Milena Paneque from CGPP, the main curator of the exhibition.
This event will be an enriching experience for everyone involved and an important step towards strengthening patient organisations that work tirelessly to improve the lives of those affected by neurodegenerative and neuromuscular diseases.