CDG patient empowerment

“Today is only one day in all the days that will ever be. But what will happen in all the other days that ever come can depend on what you do today.” ― Ernest Hemingway

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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:

• Develops, gathers, shares and disseminates information on CDG and rare diseases in linguistically and culturally appropriate formats.
• Promotes international cooperation in the field of services to patients and families

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Learn more

FindaCure's New Online Portal

- 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

- MANIFESTO “Empowered patients are a resource ”Civic Recommendations to improve the empowerment of citizens with chronic and rare diseasesand their organizations”

- The political empowerment of rare disease patient advocates both at EU and national level

Tool kits addressing the overall rare disease community

- Genetic Alliance UK
- Global Genes
- UK charity Findacure
- A new toolkit for conducting clinical trials in rare disorders
- Educational Resources from FDA
- Rare cancer patient tool kit

Advocacy tool kits from other pathologies that can be used as source of inspiration in the field of CDG and related rare diseases

- Advocating for Pulmonary Fibrosis Advocates Patients
- European Kidney Health Alliance Advocacy Guidance

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Fundraising tool kits from other pathologies

- Tips for Fundraising from National Organisation for Rare Diseases (NORD)
- Prader-Will Syndrome Association UK fundraising tool kit
- National Breast Cancer Foundation - Fundraising Toolkit
- Cure JM Foundation Fundraising Toolkit

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Media relations

- Barth Syndrome Foundation Media Toolkit
- Myasthenia Gravis Foundation of America
- Centers for Disease Control and Prevention (CDC)

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Projects and joint actions to advance rare diseases research

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Organizations & Health-related Websites

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Advanced Information

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Disclaimer: The information presented is intended to be used as a guide.

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