Batten Disease

#RareDisease

Sometimes we search for how we can make a difference. It can be intimidating to get started. What would I do? Would anyone listen?

We've recently been reminded that advocacy doesn't have to be earth-shattering to make a real difference in the lives of a few and inspire a larger group to get involved. Dana Perella's advocacy began when she wanted to save the life of her friend who was battling #BattenDisease. A couple of years later and Dana's truly impacted the #RareDisease community.

globalgenes.org/rare-champion-of-hope-awards

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 one family’s journey of hope and discovery. Seven-year-old Taylor’s diagnosis of infantile Batten disease in 2006 was grievous, but always with hope, they founded Taylor’s Tale and joined the Global Genes RARE Foundation Alliance. There, they found connections, resources, knowledge, support, compassion, all of which have helped them achieve groundbreaking victories.

Taylor is 1 out of 10 Americans who are affected by . Global Genes wants to remind everyone on World Rare Disease Day and every day, rare is not so rare.

“It has been an honor to become intimately involved with 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 comes together in a very important way the last day of February for World Day; celebrated around the globe.”
"Global Genes will continue to be involved in activities like World Day, as part of our strategy to expand awareness efforts,” Boice continued. “Over the last decade, we have established ourselves as a true partner for patients, and as such have been able to grow our network, and build on our impact, with the intention of continuing to expand our engagement globally. We are motivated about what we can and need to accomplish 10 years hence."

To get involved and raise awareness for more than 7,000 rare diseases during the month of February:

Rally for rare. Visit globalgenes.org to 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 Day. Host or take part in an event and share the details with us.

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

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