SEPTEMBER NEWSLETTER

Denim Dash Teams Cross the Finish Line - Congratulations to all Denim Dash teams on a successful summer of dashing for rare. On August 23rd, dashers gathered at the Global Genes headquarters for a local dash, followed by celebratory Wahoo's tacos. We love photos! Please continue to send your Denim Dash photos to events@globalgenes.org.

There's Still Time to Register - We're 28 days away from the 2018 RARE Patient Advocacy Summit. Join nearly 800 attendees from across the globe to connect with rare advocates and thought leaders. Sit in on educational tracks focused on growing an organization, research and treatment, among others. There will be several social meetups and opportunities for networking throughout the two-day event. See the agenda for a full list of events.

Congratulations to the 2018 RARE Champion of Hope Honorees - Each year we recognize RARE Champions of Hope for their notable efforts in rare advocacy. From the exemplary list of nominees, panelists selected the recipients to be honored as RARE Champions of Hope. Please join us October 4, 2018 from 5-10 pm as we honor these special individuals. Tickets for the Celebration are included with Summit registration, or you may purchase individual tickets here.

Global Genes Hosts First Ever cDGA Family Conference - Global Genes was thrilled to host the first ever cDGA Family Conference for patients and caregivers living with Complete DiGeorge Anomaly. The three-day event at the Chicago Children's Museum featured 17 families from three countries. For the children, many who have lived life in isolation, this was the first time meeting peers with cDGA. Conference training focused on capacity building, organizing support groups, and forging the way for this new community.

WATCH THE VIDEO

Community Spotlight | Hillary Savoie
When Hillary Savoie was pregnant, a concerning ultrasound led doctors to believe that her child might be born with a genetic disease. Eventually, doctors identified four suspect genes through various tests. Savoie, founder of The Cute Syndrome Foundation, has chronicled her experiences with daughter, Esmé in two short memoirs, Around and into the Unknown and Whoosh. In a recent RARE Cast, Hillary discusses her experiences as the mother of a child with a genetic condition, the sometimes-harrowing health emergencies she faces, and how she has learned to live with uncertainty.

LISTEN TO THE RARE CAST

Global Genes is a non-profit 501(c)(3) organization working to connect, empower and inspire the rare disease community. Global Genes ® | 28 Argonaut, Suite 150, Aliso Viejo, CA 92656 | globalgenes.org
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