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 indicated for Noonan Syndrome? Will boys affected by Duchenne Muscular Dystrophy have access to the Duchenne Centers of Excellence for their care? Will those impacted by Hypophosphatasia transitioning from pediatric to adult care have the specialists they need available and covered?

Ayelet has congenital hyperinsulinism and needs private duty nursing to attend school– will it be available for her? Will patients with Sturge-Weber Syndrome have access to all the specialists they need including neurologists, dermatologists, and ophthalmologists? Gaby is a teenager with APS (autoimmune polyglandular syndrome) Type I. Will she have access to experts who treat adults with this disease?

While these conditions may all be different, the rare disease community is linked by common concerns and needs. Please join us at a HealthCare Institute of New Jersey (HINJ) event where leaders of New Jersey’s health care community will lead a discussion on rare diseases and how the Affordable Care Act will impact patients, access, and care.

When:              December 11, 2013 – 8:30am – 11:00 am

Where:             Forsgate Country Club, 375 Forsgate Drive, Monroe Township, NJ

To sign up for the HINJ event, please click on the following link:

https://events.constantcontact.com/register/event?llr=u9ead4mab&oeidk=a07e8djv5zue9695b91

A message from NJ Rare, a working group of rare disease patients and advocates living in New Jersey. For any questions about NJ Rare contact Mary Cobb at mcobb@patient-vue.com.

1 thought on “Health Policy Forum: Rare Diseases, Patients, Care and Cures: 12/11/13, New Jersey”

  1. Robert Prager says:

    Hello, is there anyone, suffered from an (so called) (upper) Esophageal web? I suffered from it nearly my whole life (!!), in any case for much too many years (extreme troubles swallowing!). Luckily it was found and treated (very late, much too late), but I’m desperately seeking for some one, who had the same problem and I can talk to and share experiences about it

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