The Neurodegeneration with Brain Iron Accumulation (NBIA) Disorders Association was established in 1996 to serve and support all those affected by PKAN, PLAN, MPAN, BPAN, and CoPAN.
Of these, PKAN or Pantothenic Kinase-Associated Neurodegeneration (you get why we use the abbreviation), is the most common form. However, in the grand scheme of things, none of the forms are common. It’s easy to feel alone in your diagnosis. The NBIA Disorders Association was formed to change that.
They provide a variety of services for patients, caregivers, and researchers alike. The ultimate goal? A cure, of course!
Here are some of the resources available on their website:
- Information for those recently diagnosed with an NBIA disorder
- A Group Forum for collaboration
- Details about the latest research studies
- An overview of the science behind NBIA disorders
- A Networking Program where you can talk one-on-one to other patients
- Information about all of their events and research conferences
- Tips to manage pain
- A Patient Registry
- Family Stories
- Helpful links and articles for patients and caregivers
- Information on the latest clinical trials
- Bonus news: Retrophin has begun recruiting!
Additionally, they’ve funded 28 research grants since 2002 in an effort to help find a cure. The total so far? $1,098,205 in donations.
The NBIA Disorders Association has done their best to provide, in equal parts, support for patients and contributions to research. Both are incredibly valuable to the NBIA community- past, present, and future. And as we all wait in hopes of a cure, this association provides hope and love to NBIA disorder patients currently struggling with their diagnosis.