Hunter Syndrome Patient, Parents Meet with Health Minister to Discuss Rare Disease Treatment


The parents of 12-year-old Arian Chowdhury, who suffers from a rare genetic disease, plan to meet union Health Minister Harsh Vardhan to demand treatment in India at a subsidised rate. It has been eight years since Arian was first diagnosed with the disease — Hunter […]

Zumbathon® Charity Event for Hunter Syndrome on March 1st in Texas


Company Hunter Syndrome Foundation Email Location of Event Prosper, TX Relevant Website Rare Disease | Genetic Condition Hunter Syndrome, MPSII Date of Event 03/01/2014 Name of Event Zumbathon® Charity Event Event Details Zumbathon® Charity Event for Adults and Kids Saturday, March 1, 2014 […]

Dirk Nowitzki to Donate to Rare Disease Research


Dirk Nowitzki will donate $20 for every two-pointer the Dallas Mavericks make for a month to research of a rare disease, he said recently. The Mavs superstar is teaming with the iBellieve Foundation to raise money for research on MPS II, also known as Hunter syndrome, a rare and progressively […]

Health Policy Forum: Rare Diseases, Patients, Care and Cures: 12/11/13, New Jersey

HealthCare Institute of New Jersey

 Health Policy Forum: Rare Diseases, Patients, Care and Cures Will a treatment be developed in time to extend the lives of young Jason and Justin who suffer from terminal Hunter Syndrome? How will changes in healthcare affect the coverage and price of the only drug […]

What Are You Grateful For: Our Rare Disease Community

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We took to our Facebook to ask: What are you most grateful for this year? Unlike many families who may struggle with their own set of challenges, parenting a rare disease child or being a rare disease patient can add heaps of stress and sadness […]

Patient with Hunter’s Disease Seeks to Help Kids Understand Those with Disabilities


“I don’t want kids to have to go through the negatives that I had to go through growing up,” said Dutcher. Speaking to schools, families and even other patients, Dutcher connects with others through his own struggles to help them build empathy and understanding. View […]

Orphans No More: Renaissance in New Drugs for Rare Diseases


Once famously described as “orphan diseases, too small to be noticed, too small to be funded” in the Hollywood drama Lorenzo’s Oil, rare diseases are getting unprecedented attention today among drug manufacturers, who are ramping up research efforts and marketing new medicines that promise fuller lives […]