3rd Annual World Rare Disease Day

Chris Hempel is very active in searching for a cure for Niemann Pick Type C (NPC) and other rare diseases. Chris has twin daughters, Addi and Cassi, who have NPC. She has huddled many obstacles over the past couple of years. Chris and Hugh along with other families, like the Hadleys, and a team of reachers started SOAR (Support of Accelerated Research). She and her husband are working very hard for all the NPC families and I thank them for that. NPC research continues to move forward and with parents like Chris and Hugh there is no way but UP.

By: Chris Hempel

"The National Institutes of Health (NIH) will celebrate the 3rd World Rare Disease Day on February 28, 2011, with a day-long celebration and recognition of the various rare diseases research activities. The event will be held in the Lipsett Amphitheater from 8:30am to 5:15pm. Dr. Francis Collins is expected to speak. A tentative agenda has been posted.

In association with the Global Genes Project, the NIH Office of Rare Diseases Research is encouraging all attendees to wear their favorite pair of jeans to the event to support the Global Genes Project awareness campaign. The Global Genes Project awareness campaign is designed around a denim blue jeans theme and a blue denim ribbon which has become the unifying symbol of hope for the rare disease community worldwide. Check out our kid volunteers who make ribbons!

Denim blue ribbons will be distributed at the event and the Global Genes Project will be bringing some of the 7000 Bracelets of Hope which have also been made by volunteers around the world to represent the 7000 rare diseases that afflict an estimated 250 million people globally.

Supporters from the NIH Clinical Center, the NIH Institutes and Centers, the Health Resources and Services Administration (HRSA), the Food & Drug Administration’s Office of Orphan Product Development (OOPD), the National Organization for Rare Disorders (NORD), and the Genetic Alliance will also be at the event.

Attendance is free and open to the public. Unfortunately, I will not be able to attend as Pfizer is holding a World Rare Disease Day 2011 event the same day and I have been invited to speak along with other rare disease advocates."

Feeling Creative??

Got a cool bracelet idea?

Want to make a difference?

It’s easy to help show support for kids suffering from rare disease and disorders!

The Global Genes Project (GGP) volunteer team is collecting blue jean/denim inspired bracelets for families living with rare disease, the campaign is called “7,000 Bracelets for Hope.”

To help raise awareness we’re asking 7,000 jewelry designers, volunteers from the craft community and various artists to donate one bracelet to this campaign to show their support for kids living with rare disease, disorders or conditions. These bracelets will then be distributed to participating families in February 2011.

24701 La Plaza, Suite 201 Dana Point, CA 92629

HOW TO PARTICIPATE

General Help
(1) Pass-along the details to families you know who have a child with a rare disease and disorder.

(2) Ask jewelry designers, artists, crafters, scouting groups, school groups, church groups, etc. to
donate/submit a bracelet along with a personal note of support and encouragement. For example, "A little token of support to let you know you are being thought of."

(3) Post the 7,000 Bracelets for Hope badge/logo on your website.

(4) Volunteer to be a part of the Global Genes Project team. We need everyone’s help to make this campaign a success.

(5) Bracelet Donations can be sent to Children’s Rare Disease Network,
24701 La Plaza – Suite 201, Dana Point, CA 92629

And Don’t Forget to register your contribution so that we know who to thank, and how to contact you!

Parents with children who have rare disease can sign-up to participate, it’s easy!
Simply fill out the form with your contact information. In February, families will receive a very special denim/blue jean inspired bracelet from one of our bracelet designer/contributors to wear with pride.

Designers and crafters can sign-up to participate!
Provide us with your contact and product information, we will provide you information on where to ship your design.Your product link will be listed and there will be additional opportunities to promote your designs within the Global Genes community.

Anyone can make a bracelet, we are creating an easy way to show support for these children and their families affected by rare disease and disorders! Thanks for making a difference today!


God Bless