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Global Genes® celebrates World Rare Disease Day on February 28

Global Genes, a leading rare disease patient advocacy organization, launches into a month-long observance for World Rare Disease Day, recognized globally on February 28 to raise awareness for the rare disease community of more than 350 million people worldwide. 

Shining light on rare patients and caregivers around the world, Global Genes takes this opportunity to share about those involved in the journey. Laguna Beach resident Lisa James joined Global Genes in 2011 when it was still very much a small grassroots initiative. 

Starting first as an Outreach Manager, Lisa fostered and managed the highly popular 7,000 Bracelets for Hope program. Now, as the Manager of Technology Strategies, Lisa is involved in all technology decisions for the organization.

Global Genes Team

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Submitted photo

Members of the Global Genes team

“It’s so inspiring to see the community come together and celebrate and bring awareness to rare disease,” said Lisa James, Global Genes technology manager and Laguna Beach resident. “As part of World Rare Disease Day, we celebrate our RARE champions, caregivers, foundation alliance partners, and leaders. It’s a privilege and an honor to be a part of Global Genes’ efforts to expand engagement globally every day.”

There are many ways to get involved and raise awareness for more than 7,000 rare diseases during the month of February. 

Visit www.globalgenes.org and download and print the #CareAboutRare sign, take a selfie, and post on social media with #CareAboutRare and #WRDD2019. Tag a friend and challenge them to #CareAboutRare too. 

Attend an event. There are countless events, fundraisers, and exhibits during World Rare Disease Day. Host or take part in an event and share the details with Global Genes. 

Global Genes stage

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Rare Disease Advocate Rachel Callandar speaking at a past summit

Wear Blue Denim. The Blue Denim Jeans Ribbon® is a symbol of hope for more than 7,000 small rare disease communities around the world. Wearing a denim ribbon shows support for World Rare Disease Day. Ribbons may be requested on www.globalgenes.org for local events, the workplace, school clubs, etc. Don’t forget to wear blue jeans and a denim ribbon on February 28.

“It has been an honor to become intimately involved with rare disease patients, advocates, families, and stakeholders over the past 10 years,” stated Nicole Boice, Founder of Global Genes. “The culmination of the ongoing work that has been done to help build ‘community’ and ‘unity’ within rare disease comes together in a very important way the last day of February for World Rare Disease Day, celebrated around the globe.”

Global Genes is a 501(c)(3) nonprofit organization on a mission to connect, empower, and inspire the rare disease community. The organization provides hope for more than 350 million people affected by rare disease around the globe. To date, they’ve educated 6 million people in 100 countries about rare disease, equipped 30,000 patients and advocates with tools and resources, and provided $400,000 in support for innovative patient impact programs.

To learn more about Global Genes and to get involved in World Rare Disease Day 2019, visit www.globalgenes.org/world-rare-disease-day.


After the storm

After the pink clouds

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Photo by Tom Berndt

Gray clouds float like feathers in the pink sky


Buying GS cookies

Buying GS van

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Submitted photo

Katrina Martino, owner of Hudson Spa and Salon, buys cookies before all the rain started


In my solitude

In my red jacket

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Photo by Mary Hurlbut

Golden hour from Oak St View Deck


Monday after the storm in Laguna Beach

Photos by Scott Brashier

Monday ocean

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A wintry blue ocean below intriguing clouds

Monday grey

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Shades of splendid silver on a chilly winter day

Monday street

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Dramatic clouds paint the sky


Rain chain

Rain chain Aliso peak

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Photo by Tom Joliet

On Saturday – Overworked rain chain with Aliso Peak in background


Rain drops

Rain drops leaf

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Photo by Scott Brashier

Rain, like diamonds, sparkle on a leaf


Sky of lemon, sky of light 

Sky of cross

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Photo by Scott Brashier

Light breaks the clouds


Stormy weather

Photos by Mary Hurlbut

Stormy Weather car

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The rain, like arrows, hits the asphalt

No car wash needed this week

Stormy weather plants

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Misty Green 

The goats will be back!


Blue Bell invites cat lovers to the Sixth Annual Cat’s Meow Champagne Brunch on Feb 17

The Blue Bell Foundation for Cats hosts its Sixth Annual Cat’s Meow Champagne Brunch on Sunday, Feb 17 from 11 a.m. to 2 p.m. at Seven7Seven (formerly Tivoli Too). For a clawsome time, the brunch features free-flowing champagne, a buffet-style brunch, silent auction, and prize for best cat-themed attire. 

Blue Bell bottle

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Submitted photo

Pop that cork! Let the festivities begin

Tickets are $55 for adults and $15 for kids 12 and under. Cat lovers are invited to come out and support Laguna’s only cat sanctuary that provides a forever home for senior cats whose owners can no longer care for them. 

Most of Blue Bell’s feline residents come from owners who’ve passed away or have had some life-altering circumstance rendering them unable to care for their beloved cat.

Blue Bell champagne glass

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Submitted photo

It was a purrfect party!

The Blue Bell Foundation for Cats is a 501(c)(3) nonprofit organization that offers loving and compassionate lifetime care for senior cats and strives to become the leading cat retirement sanctuary promising total peace of mind to cat owners with its homelike personalized care to the cats entrusted to it.

To purchase tickets, visit www.bluebellcats.org.

Seven7Seven is located at 777 Laguna Canyon Rd.

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