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Last updated on April 20, 2014 at 8:28 EDT

Global Genes Project Unites Advocates on World Rare Disease Day 2012

February 29, 2012

Rare Pictures of Hope(TM)

Campaign Launched to Spotlight Those Suffering from Rare Diseases

NIH and FDA Unite To Hold Rare Disease Awareness and Educational Events

DANA POINT, Calif., Feb. 29, 2012 /PRNewswire-USNewswire/ — Hope – It’s In Our Genes.(TM) Today, on the rarest of calendar days, thousands of organizations and millions of rare disease advocates are observing the fifth annual World Rare Disease Day. The R.A.R.E. Project, a leading rare disease patient advocacy organization, is working through the Global Genes Project–its rare disease awareness initiative–to join forces with patients, advocates, partners, policymakers, government agencies, pharmaceutical companies and other leading organizations to shine the spotlight on the nearly 30 million Americans and millions more worldwide who are living with rare diseases.

While nearly 1 in 10 Americans live with a rare disease, only 200 of the 7,000 rare diseases have FDA-approved treatments. Roughly 95% of rare diseases do not have a single drug treatment. Approximately 80 percent of rare diseases are genetic in origin, and a large percentage of these diseases affect children.

“We are delighted to see both the NIH and FDA come together with events designed to support the global effort to raise awareness about rare diseases and to recognize the major issues faced by patients and their families battling chronic and debilitating rare diseases,” says Nicole Boice, President of the R.A.R.E. Project. “Rare diseases pose immense drug development challenges and we need to continue to build real unity within the government and rare disease community to advance treatments to reach millions of patients in need.”

In leading up to World Rare Disease Day 2012, the R.A.R.E. Project and Global Genes Project have organized numerous activities throughout the month of February to support rare disease awareness and education including:

· Rare Pictures of Hope(TM) – To kick off 2012 rare disease awareness efforts, the Global Genes Project launched the Rare Pictures of Hope(TM) campaign on Facebook. Thousands of rare disease advocates and patients have logged on to Facebook and created unique and personal photos of their loves ones with tagline, “Hope – It’s In My (or Our) Genes.” Rare diseases represented include:

15q13.3 Microdeletion Syndrome, 4Q Deletion Syndrome, Addison’s Disease, Adrenoleukodystrophy, aHUS, Aicardi-Goutieres Syndrome, Alexander Disease, Alveolar Capillary Displacia (ACD), Amourosis Congenital Leber, Angelman Syndrome, Ataxia Telangiectasia (A-T), Atypical HUS ((Hemolytic Uremic Syndrome), Autoimmune Enteropathy, Autoimmune Hemolytic Anemia, Bannayan-Ruvalcaba-Riley Syndrome (BRRS), Barth Syndrome, Behcet’s Disease, BOR Syndrome, Bullous EHK (Ichthyosis), CACH Leukodystrophy, Campomelic Dysplasia, Canavan Disease, CDG-1A, Cerebrotendinous Xanthomatosis (CTX), Charcot-Marie-Tooth Disease Type 1A, Chromosome 6q Deletion Syndrome, Citrullenemia (Urea Cycle Disorder), Cloves Syndrome, Congenital Icthyosiform Erythroderma, Congenital Myasthenia Gravis, Congenital Sensitivity to Pain, Cornelia de Lange Syndrome, Cryopyrin Associated Periodic Syndromes (CAPS), D-Bifunctional Protein Deficiency, Distal 18q- (deletion), dup 15Q13.3, Duplication & Deletion on Chromosome 10, Duplication Chromosome 14q32.33, Epidermolysis Bullosa, Ehlers-Danlos Syndrome, Eosinophilic Colitis, Esophagitis Candidi Colonization, Fragile X, GA1, Gaucher Disease 2 and 3, Gestational Alloimmune Liver Disease (GALD), Glutaric Aciduria Type I, Glutaric Aciduria Type I, Glycogen Storage Disease Type IX, Guillain Barre Syndrome, Hepablastoma, Hereditary Copro Porphyria, Heterotaxy & PCD, Heterotaxy Syndrome, Hirschsprungs Disease, Huntington’s Disease, Hypohidrotic Ectodermal Dysplasia, Idiopathic Intracranial Hypertension, Infantile Batten Disease, Infantile Neuroaxonal Dystrophy, Infantile Pompe Disease, Joubert Syndrome, Juvenile Batten Disease, Juvenile Dermatomyositis, Juvenile Huntington Disease (JHD), Juvenile Metachromatic Dystrophy, Klippel Feil Syndrome, Krabbe Leukodystrophy, Lamelar Ichthyosis, Lamellar Ichthyosis, Langerhans Cell Histiocytosis, Late-Onset Krabbe Disease,Leber’s Congenital Amaurosis, Leigh’s Disease, Lennox-Gastaut Syndrome, LINCL, Macrocephaly-capillary Malformation Syndrome, Maple Syrup Urine Disease, Marfan Syndrome, Mast Cell Activation Syndrome, Mastocytosis, McCune Albright Syndrome, Metachromatic Leukodystrophy, Microscepely – Capillary Malformation, Mitochondrial Disease, ML II/III Mucolipidosis, Moebius Syndrome, Mosaic & Translocation Down Syndrome, Mosaic Trisomy 22, MPS 1 Hurler Syndrome, MPS 1 Hunter Syndrome, Mucolipidosis Type 3, Nager Syndrome, Neimann Pick Disease Type C, Neonatal Hemochromatosis (NH), NKH (non ketotic hyperglicinimiea, Noonan Syndrome, Omithine Transcarbamylase Deficiency, Periodic Fever Syndrome, Peutz Jeghers Syndrome, PFAPA, PHACES Syndrome, Phelan-McDermid Syndrome (22q13 deletion), POLGI Mitochondrial Disease, Pompe Disease, Prader-Willi Syndrome, Progeria, Pten Hamartoma Tumor Syndrome, Pyruvate Kinase Deficiency, Russell-Silver Syndrome, Salt-Wasting Congenital Adrenal Hyperplasia, Sanfilippo Syndrome (MPS-IIIB), SCN9A Gene Mutation, Sideroblastic Anemia, Simpson Golabi Behmel Syndrome, Sturge-Weber Syndrome, Systemic Autoinflammatory Syndrome, Systemic Mastocytosis, Trisomy IO, Tuberous Sclerosis (TSC2), Turner’s, Waardenburg Syndrome Type II, X-linked Hypophosphatemia, X-Linked Icthyosis

· Blue Genes Ribbon(TM) - Tens of thousands of handmade Blue Genes Ribbons(TM) have been created and distributed by volunteers to rare disease foundations and supporters. The Blue Genes Ribbon(TM) has become the unifying symbol of hope for all those who have been touched by rare diseases. Corporate support for the Blue Genes Ribbon(TM) efforts have come from BIO, BioMarin, Genzyme, Healthline, Illumina, Pfizer and Shire.

· Wear That You Care(TM)- Global Genes Project advocates are participating today in a number of celebrations and events including the National Institutes of Health day-long celebration which is sponsored by the Office of Rare Diseases Research (OORD) and the National Center for Accelerating Transitional Research (NCATS) and NIH Clinical Center. In association with the Global Genes Project, attendees are encouraged to wear jeans to show their support of genetic rare diseases.

· 7000 Bracelets for Hope(TM)- Jewelry designers, artists, crafters, volunteers and children’s groups have created and donated thousands of handmade bracelets that have been distributed to rare disease patients and families around the globe. The 7000 Bracelets for Hope(TM) campaign is also designed around the color blue and a denim jeans theme. Each bracelet is uniquely designed and individual, just as rare diseases are frequently unique to the genetics of the individual.

To join the Global Genes Project movement, visit www.globalgenesproject.org or on Facebook at http://www.facebook.com/globalgenesproject. To join the 1 Million for RARE(TM) team on Facebook, visit: http://on.fb.me/1million4rare. For more information on the R.A.R.E. Project, visit: http://RAREproject.org/.

About R.A.R.E Project and Global Genes Project

The R.A.R.E. Project was founded in 2009 by rare disease patient advocates to provide support for families living with rare diseases worldwide. The organization’s mission emphasizes increasing rare disease awareness, public and physician education, building community through social media and funding research to find treatments for rare diseases.

The Global Genes Project, an initiative managed by the R.A.R.E. Project, is a global public awareness campaign centered around a denim jeans theme and the Blue Genes Ribbon(TM). Similar to the pink ribbon for breast cancer, the Blue Genes Ribbon(TM) has become the unifying symbol of hope for people living with rare diseases.

SOURCE R.A.R.E. Project


Source: PR Newswire