R3. “YOU’RE NOT ALONE” NETWORK

Launch of the «You’re Not Alone» network for rare disease

Network’s objectives

‘You’re Not Alone’

Encourage investment in research on Rare Diseases

Promote and support initiatives that drive funding and development of scientific studies, clinical trials, and research programs aimed at improving knowledge, treatment, and care for RD.

Promote the inclusion and participation of young people with Rare Diseases

Implement the project «QUALITY YOUTH MENTORING FOR INCLUSION,» designed to create mentoring programs that facilitate the social, educational, and professional inclusion of young people affected by RD, ensuring their full participation in society.

Establish recognition as a trusted advisor on Rare Diseases

Strengthen the network’s capacity to provide expert advice to national governments and European institutions on rare diseases, influencing the development of public policies and strategies for healthcare and social support.

NETWORK

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CONTACT INFORMATION

Members