Empowerment
|
Empowered CDG and rare disease patients are a driving force behind the development of translational research and therapies.
The Portuguese Association for CDG aims at supporting and empowering patients and families to play an active role in shaping national and international health care provision that is appropriate to their needs. To achieve this goal, the APCDG:
|
- This initiative from Findacure aims to empower the Rare Disease Community by improving communication and skills.
- A series of courses and webinars will be available.
- Registration is Free
|
The importance of empowerment of rare disease patient advocates
|
Tool kits addressing the overall rare disease community
|
Advocacy tool kits from other pathologies that can be used as source of inspiration in the field of CDG and related rare diseases |
Newsletter
|
|