FAMILY SUPPORT

Support is available. You are not alone!

Other parents have also shared their stories with NBIA. Hearing each other's journeys can be comforting in knowing we aren't alone and can support each other as we seek the best care and a cure for our loved ones. 

"The video shows some pictures of him throughout his life before his diagnosis and after. He is one of 3 males in the world with it and there is no cure."

“Jennifer and Brian Greene’s 3 year yold daughter can walk on her own, has never spoken a single word, and has sever cognitive and developmental delays.  Now we are fighting for her life…” 

CONFERENCES & GROUPS

The conference is open to all NBIA families, friends, members of the medical community and anyone who is interested in learning more about NBIA.

In our drive to find a cure for NBIA, we provide support to families, educate the public and accelerate research with collaborators from around the world.

  • The Alliance is an international umbrella organization for NBIA lay advocacy groups. It started in January, 2012, in conjunction with the kick-off meeting of the European Union funded project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration).

  • As of January, 2017, we are 8 members strong from member organizations in Canada, France, Germany, Italy, Netherlands, Spain, Switzerland and the United States.

Use this link to explore a graphic which covers:

  • Ongoing work and Organizations in Europe, North America, Asia and the Middle East

  • Pharmaceutical Companies

  • Communities, Organizations and Facebook

  • Disease States 

“For the first time ever, people affected by an NBIA disorder can tell us about their disease and how it affects their lives. Better information about how each of these diseases progresses prepares us for therapeutic drug trials. We are building knowledge to determine if new drugs improve health and function. People with an NBIA disorder as well as family members will be able to contribute. Stay connected here and help our community become 'trial ready.'”

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June 13, 2017

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