RDI Membership Meeting by Debra

Berlin

2025-06-17 13:51:04 UTC

Diversity and inclusivity. Finding overlapping issues and collaborating with more than just your own organization. Also providing youth with the tools and skills to drive future growth and innovation.

Raleigh, NC

2025-06-17 13:53:41 UTC

Amazing RDI member meeting!! Looking forward to a great year together 🍀

Barcelona

albaparejo — 2025-06-17 13:53:49 UTC

True inclusion happens when voices aren’t just heard, but truly valued. By including all voices in the process and building decisions with communities, we move toward co-creation and collective change. Young people living with a rare disease bring unique experiences and insights—rooted in our needs, our pursuit of independence, and the ways our condition shapes every aspect of our lives, (work, social relationships, mental health). Our voices are essential to designing solutions that genuinely improve quality of life.

We are ready to work along all of you! 🗣️

Kigali

manzindamukunze — 2025-06-17 13:54:08 UTC

London

2025-06-17 13:55:53 UTC

By sharing what you are comfortable with and teaching other in rare conditions.

There is a story in everyone's live.

Singapore

edmundlau3 — 2025-06-17 13:56:44 UTC

Barcelona

albaparejo — 2025-06-17 14:00:50 UTC

Susana Carvajal (FEDERG): Young people have a different perspective than adults, due to their life expectancy, their desire to change the world, and improve the quality of their daily lives, especially when rare diseases limit their lives, their education, their job opportunities, and their independence. Their urgency to speak out about their unmet needs is our moral obligation and our goal: to facilitate their path and support their ideas for improving their daily lives and foster their expectations.Holding roundtables where they can discuss their needs can give us a measure of how today's youth feel about DR, acting and reporting.

Zimbabwe

2025-06-17 14:02:37 UTC

Foster collaboration amongst patient advocates and other sectors.

Nairobi

2025-06-17 14:10:27 UTC

We can ensure all voices are included by including patients and caregivers in decision making. The way I see it it’s about building a bigger table instead of focusing on how small the table is.