Influenced by Rare Disease Patients at the Tribute to Hope Gala, An Eighth Grader is Inspired to Write Her English Paper on Life and Hope

Kate O'Connor, an inspired advocate for children affected by rare disease

On the evening of September 27, 2012, Kate O’Connor attended the 1st Annual “RARE Tribute to Champions of Hope” benefit at the Balboa Bay Club & Resort in Newport Beach, CA. The event raised funds and awareness for rare and genetic diseases that impact 1 […]

National Tay-Sachs & Allied Diseases Association (NTSAD) To Hold Second Annual Day of Hope

The National Tay-Sachs & Allied Diseases Association (NTSAD) will hold its 2nd Annual Day of Hope on September 22, 2012

Organization: National Tay-Sachs & Allied Diseases Association (NTSAD) Submitted by: Diana Pangonis The National Tay-Sachs & Allied Diseases Association (NTSAD) is one of the oldest patient advocacy groups in the country. NTSAD gives help and hope to thousands of individuals and families from many backgrounds […]

Joanna Has Hope Despite Suffering From Primary Immune Deficiency Disease (PIDD)


My name is Joanna and I was born with hypogammaglobulinemia, which is a Primary Immune Deficiency Disease (PIDD) and a genetic defect of the immune system. It often takes a ridiculously long time to be diagnosed with PIDD, on average of nine to twelve years! […]

Systemic Scleroderma Patient Defies Odds And Educates Pharmacy Students on Rare Disease


My name is Melissa and I have had Systemic Scleroderma since the age of three.  Systemic scleroderma is an autoimmune disorder that affects the skin and internal organs. Autoimmune disorders occur when the immune system malfunctions and attacks the body’s own tissues and organs. The […]

Valentines Day: Hope, Heartbreak and Infantile Pompe Disease


In 2002 after years of trying, we were blessed with our beautiful son, Sean. When Sean was two and one-half months old, we began to notice that he was weak and getting thin. Multiple pokes and prods with numerous tests concluded the diagnosis of Infantile Pompe […]

7000 ‘Bracelets for Hope’ Huge Success Due To Donations By Jewelry Designers


The 7,000 ‘Bracelets for Hope’ campaign continues to raise awareness and give hope to families affected by rare disease! With over 700 families signed up, over 1,000 bracelets received from designers and volunteers from around the world and a Facebook presence that exceeds 16,000 supporters, […]

Ataxia-telangiectasia: Giving Hope


My niece Cayenne has A-T (Ataxia-telangiectasia), a rare childhood, progressive and degenerative disease that affects a variety of the body’s systems. After a year of testing, Cayenne was finally diagnosed when she was almost three. Her main symptom of A-T was her wobbly walk – she […]