BID to RID AHC! Alternating Hemiplegia of Childhood Foundation Online Auction Hosted by Auction Frog

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Organization: Alternating Hemiplegia of Childhood Foundation – AHCF Submitted by: Sharon Ciccodicola AHCF is holding an online Auction from November 1 – November 16th. As the Alternating Hemiplegia of Childhood Foundation (AHCF) celebrates its 20th year as a nonprofit organization, we look to the generous […]

Global Genes Founder Returns to Critical Mass Radio to Discuss Recent Gala

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Nicole Boice, President & Founder of Global Genes | RARE Project was invited back to Critical Mass Radio to give an update on the organization’s latest event, The Tribute to Champions of Hope Gala. Boice was interview by host Richard Franzi, who works exclusively with Southern […]

Patient Advocacy Summit 2013 Roundup: Calling all Caregivers

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First Put on Your Own Oxygen Mask In case of emergency, flight attendants instruct you to put your own oxygen mask on before you try to help your children or other passengers. A mother might think, “They can’t tell me what to do. I’d put […]

“Chocolate Bar” Boys Meet the Lakers!

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Most boys will have to wait until a major growth spurt before Laker’s cheerleaders would give them the time of day, but at the Tribute to Champions of Hope Gala–the pom-poms rained down on the Chocolate Bar Boys. Upon winning their award for “Rare Champion,” […]

We Care About Rare: Stephanie’s Global Genes Experience

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On September 20th and 21st, I had the honor of attending the Global Genes Patient Advocacy Summit and the Tribute to Champions of Hope Gala in Newport Beach, California. Global Genes is an organization passionately dedicated to advocating, unifying and bringing much needed awareness to […]

Interview with Writer, Advocate and Actress Eileen Grubba

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Global Genes | RARE Project : Welcome to Global Genes! We are so excited to see you later this month at the Global Genes Gala. You’ve been in dozens of TV shows, TV movies and on the big screen—but lately, you’ve also been very involved in advocacy […]

The Balancing Act on Lifetime TV’s Carri Levy Honored with RARE Champion of Hope Award

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Levy recognized for work on show’s “Behind the Mystery: Rare & Genetic Diseases” Series which provides viewers with treatment information, helps educate and empower patients, their families, caregivers and the medical community O2 Media™ Inc. is proud to announce that Carri Levy, Senior Associate Producer […]