Rare Diseases Create Uncommon Needs

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Rare Disease Day is a poignant time to think of all those facing rare diseases, particularly little-known and often under-researched conditions like rare fatal neurological disorders. These diseases, occurring as rarely as one in 100,000-300,000 births, are a big challenge because of their devastating impacts but coupled with a scarcity of resources and support systems for them. The B Brave Foundation fills that painful void for many children and families.

Rare diseases can be profoundly isolating. Despite hundreds of millions facing a rare disease of some kind worldwide, most have no cure and lack sufficient medical research funding, leaving patients and their families feeling alone and without adequate support or understanding from medical and social communities.

B Brave emerged from this pressing need for action and advocacy because our founders have lived through that pain and isolation. We focus exclusively on children and families affected by rare fatal neurological disorders—a group that all too often faces diagnoses with few allies or resources. B Brave fills this gap by providing crucial support these families so desperately need. We help in ways both big and small, including:

  • Direct financial assistance to ease the burden of medical bills, losing a breadwinner to caregiving and other circumstances
  • Emotional support through connecting people with peers, professional counseling and more
  • Healthcare advisory services designed to help maximize the time families spend together
  • Support for caregivers

Our work is vital because these families travel an incredibly tough road. B Brave strives to make it just a bit easier. By focusing on rare fatal neurological disorders, B Brave addresses an area of urgent need—one that is often overlooked. We work to ensure that these families are not forgotten, offering hope where there is often little to be found.

We help fill gaps with financial and emotional support, coupled with our relentless advocacy. Your support ensures we keep delivering that life-changing help. Join us in our mission as we build bridges to a brighter future.

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