Rare Diseases Archive

Developments in Renal Medullary Carcinoma

Cora Connor shares her brother’s story of renal medullary carcinoma and its association with Sickle Cell trait. It is not necessary to have Sickle Cell disease to have RMC.

Updating the Advocacy Activities of Robin and Mike

Robin and Mike have a discussion about their current activities in healthcare advocacy, and how advocacy can be beneficial to persons dealing with personal challenges in medical conditions

Helping your baby with metabolic disorders

A young mother speaks with Joyce about learning that her beautiful baby has a metabolic disorder — what that means and how to help.

Dealing with Complex Medical Disorders

Medical conditions that cross medical specialties are particularly challenging for patients and their doctors. How to help?

Our Diagnostic Odyssey

Joyce and Robin speak with Patricia Weltin about her difficult road to diagnosis for her daughters, and what she has learned that can help others.

Cari Cornish and Special Education Law

Joyce talks with Carin J. Cornish, an attorney specializing in Special Education Law. Cari is committed to creating the right environment for every child.

Stephanie Sugars and the PJS Community

Mike and Joyce speak with Stephanie Sugars about Peutz-Jeghers syndrome (PJS) and the progress made in the online support group since 2000.

Diagnosing a Rare Disease – a Case from Ireland

Mike and Joyce talk with Gloria about her family’s adventure getting to a diagnosis of a brain tumor and a rare disease.

Braeden’s Challenges

Ray Flynn, former Mayor of Boston, fights with passion for his grandson’s health and quality of life. Braeden has a rare condition that presents him and his family with significant challenges.

Rare Disease United – One in Ten is affected

Patricia Weltin speaks with Mike and Joyce about plans for Rare Disease Day 2014. Rare Disease United focuses on raising awareness among the general public in her state, and helping to facilitate the gathering of people affected by rare diseases so that they can support one another.