Children’s Cancer Clinic Opens in Reno Led By Pediatric Hematologist Oncologist Dr. Caroline Hastings (Addi and Cassi’s doctor!)

Many people do not know that Addi and Cassi’s primary doctor is not a geneticist, metabolic specialist, neurologist, or cholesterol expert but is one of the nation’s leading pediatric cancer doctors.  Her name is Dr. Caroline Hastings and she is the medical director for the Hematology/Oncology/Bone Marrow Transplant unit at Children’s Hospital & Research Center Oakland […]

Rare Disease Day 2012 – Spread This Call To Action To Make A Difference!

World Rare Disease Day 2012 is coming up on February 29th.  Consider these staggering statistics. Each year, 139 BILLION U.S. dollars are invested in medical research — much of it from tax payers Each year, 800,000 papers are published in medical journals by scientists Each year on average, ONLY 21 new drugs are approved by […]

CureCaps Hat Project Makes First Medical Research Grants To Leading Alzheimer’s and Athersclerosis Researchers

Soon after Addi and Cassi were diagnosed with a fatal genetic cholesterol disease called Niemann Pick Type C disease, we organized a grassroots effort to collect “CureCaps” from volunteers around the world and sell them to help raise money for research into brain diseases that impact millions of people worldwide. We want to report to […]

National Center for Advancing Translational Sciences (NCATS) Announced By National Institutes of Health (NIH) Director Francis Collins

The Global Genes Project, a rare disease patient advocacy organization, was invited to present a giant handmade denim genes ribbon to Dr. Francis Collins on February 28 — Rare Disease Day 2011. This year the NIH Office of Rare Disease Research (ORDR) encouraged everyone to wear jeans to show support for the campaign of using […]

RareArtist.org – Rare Art Created by Rare People to Support Rare Disease Awareness

What a great idea — a new website to showcase Rare Art created by Rare People to support Rare Disease awareness.  The Kakkis Everylife Foundation has launched RareArtist.org for artists of all ages affected by a rare disease. There are almost 7,000 rare diseases that affect more than 25 million Americans — many of them […]

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