Click on any of the thumbnail images to view in a larger size. You can also view a photo gallery of gala and picnic pictures on our Facebook page at https://www.facebook.com/NBIADisorders.

To view videos from the gala, please CLICK HERE.

Newly Diagnosed
Information

Sharing Stories

NBIA Families and Friends

Connect with Us

The Story of a Newly Diagnosed NBIA Family

Dear Friend,

The day you learn that you or a loved one has an NBIA Disorder might be the worst day of your life. We understand because we’ve been there. Take heart; you have come to the right place. The NBIA Disorders Association is dedicated to finding a cure for these rare disorders and supporting you in this challenging journey. Welcome. We are glad you found us.

We represent a group of families and researchers who are an excellent resource to those facing a diagnosis of NBIA. You no longer have to cope with this alone. From all over the world, NBIA families communicate with each other through our various support programs.

We can help you:

• Understand the diagnosis and symptom management options
• Keep updated on research efforts
• Connect with other families that truly understand what you are going through

Getting Started:

• Fill out our Connect With Us form so that we can add you to our NBIA families database. This enables us to contact you with information of special interest, such as upcoming clinical trials, new research findings, family conference schedules and other important news.
• Read the articles especially for the newly diagnosed provided below and explore the other areas of our website when you are ready. This information will provide the tools you'll need to manage the disorder as much as possible and cope on a day-to-day basis.
• Read our Overview of NBIA Disorders to get a better understanding of what NBIA disorders are and the common characteristics they share. Read the specific disorder information provided to learn about the particular NBIA disorder that affects you or your loved one.
  • ◦ BPAN
  • ◦ PKAN
  • ◦ PLAN
  • ◦ MPAN
  • ◦ FAHN
  • ◦ CoPAN
  • ◦ Aceruloplasminemia
  • ◦ Nueroferritinopathy
  • ◦ Woodhouse-Sakati
  • ◦ Kufor-Rakeb
  • ◦ Idiopathic NBIA
• Join our Family Networking Program, Facebook group and Facebook page for even more support. These programs put you in touch with other families and enable you to ask questions about treatments and other matters. You can learn from others how they cope with a rare disorder and care for their loved one.
• Fill out our Questions and Comments form relating to this new diagnosis.

We welcome you and your family to our NBIA Community and hope that we can meet your needs at this difficult time of learning about and accepting an NBIA diagnosis. Right now, your life has been up-ended. But as time passes, a "new normal" evolves, and we can help you reach that stage, too.

There is hope through research. The NBIA Disorders Association is working every day to promote research seeking a treatment or cure for all of our NBIA disorders. Please join us in our quest and let us know how we can help.

Sincerely,

Amber Denton
President

Questions & Comments

We welcome you and your family to our NBIA Community and hope that we can meet your needs at this difficult time of learning about and accepting an NBIA diagnosis. Please contact us if you have questions or comments relating to this new diagnosis.

Ask Us

20 years old! We danced, picnicked and made new plans.

Members of 23 NBIA families from around the country, along with longtime researchers and supporters, helped the NBIA Disorders Association celebrate 20 years of accomplishments and set the tone for the future. It was decidedly hopeful.

Our 20th anniversary celebration included a dinner gala Aug. 6, a family picnic the next day and a meeting with NBIA families, researchers and board members on Aug. 8.

The sold-out gala, held at a Covington hotel, provided sweeping views of the Cincinnati skyline while the 127 guests had the opportunity to dine, dance and donate money to advance our organization’s work in the coming years.

Many thanks to our generous donors and our event’s premier sponsor, Retrophin, Inc., a company working on an NBIA drug. Retrophin donated $25,000 to underwrite the cost of the anniversary weekend.

We also deeply thank Cincinnati City Council Member Kevin Flynn, who spoke at the event about living with a disability and presented a city council resolution declaring it NBIA Disorders Association Day on Aug. 6 in Cincinnati.

 Others also freely gave of their time to make the gala a memorable evening. We are grateful to our emcee, Barrett Cohen, and DJ Ron Schumacher, who kept us dancing until midnight.

At Sunday’s picnic, the Northside Knights of Columbus graciously donated and cooked burgers and hotdogs with all of the fixings, including homemade desserts.

On Monday, Aug. 8, we concluded our anniversary weekend with a meeting at which families, researchers and our organization’s board discussed future research priorities.

You can view a photo gallery of gala and picnic pictures on our Facebook page at https://www.facebook.com/NBIADisorders.

View Photos from the Events

Watch Videos from the Gala