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Events

The Dash Alliance and RARE Revolution Magazine – levelling up for RARE

Raleigh, USA, 20 July 2022 – The Dash Alliance partners with RARE Revolution Magazine and the RARE Youth Revolution to deliver a hybrid event that celebrates five years of The Dash Alliance’s flagship virtual event The Rare Fair.

The Rare Fair 2023 will be a hybrid event for the rare disease community, streamed live from the Research Triangle Park in Raleigh, North Carolina, from 12–15 July.

“We are honored to present this event in partnership with RARE Revolution Magazine and RARE Youth Revolution, to bring an exciting agenda focused on levelling up the rare community. “Our relationship with the team at RARE Rev is built on aligned values and vision, and this partnership brings together the passions and energies of both of our teams to deliver a truly dynamic and inclusive event.” – Eden Lord, CEO and founder of The Dash Alliance

The agenda for the main conference has community at its heart. It is designed to bring together all rare disease stakeholders to better understand people’s lived experience and the challenges and opportunities in rare disease. The Rare Fair 2023 will include topics such as emergency care with a rare disease, next-generation real-world data, medical gaslighting, siblings, technology-assisted independent living, accessible travel and fashion, and for the first time, a RARE Youth track, which will be dedicated to sharing the voices and experiences of our young community.

“Over 50% of those impacted by a rare disease are children or young people and yet their voices and experiences are missing from our mainstream events. It is time to turn the tide and design events that are fully inclusive of the whole community.” – Nicola Miller, co-founder and creative director of RARE Revolution Magazine

Straight after the main conference is the inaugural RARE Youth Festival, an action-packed full-day event designed to bring young people and their families together to share experiences, showcase their talents and take part in workshops and fun activities. This will include the Illuminating RARE Talent Intern Recruitment Fair where young people can learn about writing their CVs and levelling up on LinkedIn, and get their first professional headshots. Rare Fair Junior, for younger children, will have activities such as mad scientist sessions and art workshops, and there will be plenty of time for making friends too, with networking sessions and a Friday night disco.

Saturday will also feature a day-long workshop programme to help advocates and non-profit attendees to level up and grow their non-profit organisations, regardless of the stage they are at.

The Rare Fair 2023 will be a truly inclusive event. On-site day care will be available for families from 12–14 July and travel grants will be available for patients and advocates.

So, save the date and pre-register your interest at therarefair.com

If you would like to find out more about sponsorship and exhibiting opportunities for Rare Fair 2023 or the RARE Youth Festival, contact therarefair@thedashalliance.com 

About The Dash Alliance

The Dash Alliance is a social enterprise designed to support the rare disease community through the creation of sustainable digital resources. We work to bring the patient perspective to common challenges in the rare disease space and we seek to help expedite diagnoses, reduce time to treatment, and provide equitable access to validated medical resources.

Through its pioneering virtual events and accessible resources, Dash provides digital platforms for rare disease stakeholders to collaborate across the globe.To learn more about The Dash Alliance, visit thedashalliance.com or reach out at hello@thedashalliance.com.

About RARE Revolution Magazine

RARE Revolution Magazine is an independent not-for-profit publication dedicated to elevating the voice of the rare disease community. It provides exceptional articles of interest to the rare disease community. Through its magazine, online presence and social media, it provides platforms and high-quality articles to support disease awareness and education across stakeholders, sectors and geographies. In these you will find compelling voices from rare disease advocates and patients, articles from clinical, research and pharmaceutical teams and the latest in ”RARE” advancements. RARE Revolution Magazine’s community continues to grow virtually and through its global networks and ecosystems. To find out more about joining the #RARERevolution visit rarerevolutionmagazine.com or contact the team at hello@rarerevolutionmagazine.com

About The RARE Youth Revolution

The RARE Youth Revolution is a dedicated news platform for young people by young people, providing access to relevant content centred around rare diseases. It provides a trustworthy environment for young people to discuss their experiences in a sensitive and age-appropriate way and feel connected and inspired by others who share their experiences.

In addition, the RARE Youth team carry out projects that are designed specifically around their needs. These include the Illuminating RARE Talent Intern Programme and the Understanding Genetics and Relationships project.RARE Youth Revolution is building a blueprint to empower a future generation of rare disease advocates. Visit rareyouthrevolution.com or contact the team at hello@rareyouthrevolution.com to find out more.


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