Global Genes’ rare disease advocacy events set for Sept. 18-21

Week in RARE will allow rare disease leaders to network, learn, inspire

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by Mary Chapman |

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For the first time, the rare disease patient advocacy organization Global Genes will hold its RARE Health Equity Forum, RARE Advocacy Summit, and other events during a single week, from Sept. 18-21 in San Diego.

The global event, called Week in RARE, will also include the nonprofit’s Rare Champions of Hope Awards and a meeting of the Global Advocacy Alliance and RARE Corporate Alliance, both of Global Genes.

It offers an opportunity to gather rare disease advocates and leaders in the same space to network, learn, and inspire each other. The forum and summit will run successively, with all events held at the Sheraton San Diego Hotel & Marina.

Week in Rare targets patients, caregivers, rare disease advocates, scientists, biopharmaceutical representatives, and anyone else who seeks to learn how to better support those with rare disorders such as aromatic L-amino acid decarboxylase deficiency.

“By bringing these events together in a single time and place, we are creating an unparalleled opportunity for rare disease advocates to engage with each other, build relationships, and help them understand what they can do to change what it means to live with a rare disease diagnosis,” Charlene Son Rigby, Global Genes’ CEO, said in an organization press release. “In addition, these events will help patients navigate the complicated landscape of healthcare more effectively, offer patient organizations solutions to expand their reach and improve their value, and allow the entire rare disease community to understand the power they have to accelerate the development of treatment and therapies.”

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RARE Health Equity Forum

The RARE Health Equity Forum (previously the RARE Health Equity Summit), to be held Sept. 18-19, will bring together rare disease stakeholders to pinpoint ways to improve care in underserved communities. Sessions will offer tools and insights to help mitigate biases, barriers, and challenges marginalized communities face. Registration fees range from $150 for patients and patient advocates to $1,350 for corporate/industry representatives.

Mario Estevez, an organizer/trainer for the Racial Equity Institute, will deliver a keynote address titled “Racism – A Historical Foundation for Systemic Disparities.”

Forum topics will include “The Intersectionality of Identity, Culture, and the Rare Disease Experience,” “Engagement Strategies: How to Find and Leverage Partnerships with Community Leaders,” “The New Generation of Medical Care?: Bringing Health Equity and Positive Health Outcomes to Rural and Underserved Populations,” “Leveraging Underutilized Health Services to Support Underserved Populations,” and “Uniendo Voices, Unlocking Solutions: Advancing Hispanic Inclusion in Rare Disease Advocacy and Research.”

RARE Advocacy Summit

The RARE Advocacy Summit (formerly the RARE Patient Advocacy Summit), to run from Sept. 19-21, is one of the world’s largest gatherings for the rare disease community.

It will offer insights into recent rare disease innovations, best practices for advocacy, and immediately actionable strategies in areas including community building and sustainability, personal support and advocacy, research and research enablement, insights into science innovations, and collaborations in research.

Amy Dockser Marcus, Pulitzer Prize-winning author of “We the Scientists,” will present the opening keynote address. Registration fees range from $150 for patients and patient advocates to $1,800 for corporate industry.

RARE Champions of Hope Awards

Then there is the RARE Champions of Hope Awards, which occurs Sept. 19 during the RARE Advocacy Summit and will recognize rare disease community members for their creative and impactful approaches to research, advocacy, and industry.

“We hope that more attendees can take advantage of the unique content available during both events at the Week in RARE, and see the value that each event offers,” said Nicole Boice, Global Genes’ founder and chief mission officer.

“In addition to plenary and keynote sessions, attendees will benefit from focused tracks, working group sessions, and our new one-to-one format providing advocates time to consult with experts about a variety of topics,” Boice said. “We want attendees to walk away with real actionable next steps that will drive progress for themselves and their communities.”

Global Genes provides patients and advocates with a continuum of services throughout their disease journey.