PXE International to raise funds through dare to be raRe
Oyster Bay, N.Y. – PXE International, based in Washington, D.C. is raising funds to support its mission through dare to be raRe®, a clothing line created to help rare disease organizations raise unrestricted funds.
Pseudoxanthoma elasticum, PXE, is an inherited disorder that causes select elastic tissue in the body to become mineralized, that is, calcium and other minerals are deposited in the tissue. This can result in changes in the skin, eyes, cardiovascular system and gastrointestinal system. PXE International provides support to families, educates clinicians and promotes research to improve the quality of life of those affected.
PXE International is the fifth organization to take part in dare to be raRe®. Others include: the Hermansky-Pudlak Syndrome Network, the National Organization for Albinism and Hypopigmentation, the Cystinosis Research Network and the Lymphangiomatosis & Gorham’s Disease Alliance.
Many people “live a rare life”, struggling with diseases that are unknown and barely pronounceable. There are 30 million people in the United States that are living with one of 7,000 rare diseases. That equates to 1 in every 10 Americans! Each rare disease community tries to help themselves by funding vital research and dreams for a cure. The funds needed for drug development and novel treatments are prohibitive. With so much at stake, non-profits tirelessly move from one fundraiser to another, making only a small dent in their big goals.
dare to be raRe® will begin by offering organizations that join with dare to be raRe, Inc. $10 for every apparel item they sell online. They may also purchase bulk orders to sell at their own events. The dream is to establish a brand that goes beyond one rare disease community and can build traction in the general public. All proceeds are put back into member organizations.
dare to be raRe, Inc. provides quality apparel and gives you a hassle-free way to fundraise. Once an organization agrees to join with dare to be raRe, Inc., their name will appear in a drop-down menu at checkout. Supporters can then choose the cause to benefit from their purchase.
To learn more about dare to be raRe, Inc. go to: www.daretoberare.org.