ALISO VIEJO, Calif., April 13, 2017 /PRNewswire/ — Global Genes®, a leading rare disease patient advocacy organization, is proud to announce the 2017 RARE Patient Impact Grant recipients. Launched at the 2015 RARE Tribute to Champions of Hope, this program directs financial support to deserving rare disease foundations and patient advocacy groups providing equipment, resources, and support to rare disease patients and their caregivers.

Now in its second year, the 2017 RARE Patient Grant Program offers two categories of funding, RARE Innovation and RARE Support. The 2017 grants were awarded to organizations making great progress on the path to finding treatments and cures for rare disease patients. 

Collectively, rare disease affects 30 million Americans and 350 million people worldwide. The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the deadliest and most debilitating worldwide.

«I’m overwhelmed with joy that the RARE Patient Impact Grant program continues to grow and distribute funds to such a worthy recipient base,» explains Nicole Boice, Founder and Chief Executive Officer of Global Genes. «Imagine how much closer we could be to finding cures and treatments if Global Genes could grant funds to all applicants – we want to do more.»

The RARE Patient Impact Grant program is funded by community donations, individual donors, funds from Global Genes fundraising events such as the Denim Dash, the Tribute to Champions of Hope, and more. Global Genes is committed to growing this signature program each year and making it easier for organizations to apply and receive the critical funding needed. To get involved in a local event, to donate, or to learn more please visit  https://globalgenes.org.

Global Genes would like to congratulate the fourteen grant awardees:

  • AMEN Support: Empowering Patients through MEN Education
  • Bohring-Opitz Syndrome Foundation, Inc.: 2017 BOS Meet Up
  • CureDuchenne: Durable Medical Equipment Guide (aka DME Guide)
  • PKD Foundation: ARPKD Patient and Caregiver Handbook
  • Alport Syndrome Foundation: Ask the Experts Webinar Series
  • SBS Cure Project: Medical or Education Travel Grant
  • The Marfan Foundation: Conference Scholarship Program
  • Platelet Disorder Support Association: ITP Community Network
  • Cardio-Facio-Cutaneous International: A Day of Caring at the CFC International Family Conference
  • Fibrous Dysplasia Foundation: Expanding Access to the FDF Patient & Family Conference via Livestream
  • Cure Sanfilippo FoundationDevelopment of Global Clinical Guidelines for Sanfilippo Syndrome
  • Global Foundation for Peroxisomal Disorders: Zellweger Spectrum Disorder Focus Group Project
  • Angioma Alliance: New Mexico CCM Patient Engagement Project
  • The Brain Recovery Project: Frog Hand

Global Genes will accept RARE Patient Impact Grant applications for 2018 between June 1, 2017 and September 18, 2017. To learn more about the 2017 RARE Patient Impact Grant awardees and their programs please visit https://globalgenes.org/raregrants.

About Global Genes® – Allies in Rare Disease
Global Genes is a leading global rare disease patient advocacy organization. The mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections and support to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.

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SOURCE Global Genes