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Archives for: October 13th, 2021

The Strength of Families

Written by Valaree DonFrancesco on October 13, 2021

On the show today, Aprill Lane is a mother of five and rare disease and infertility advocate — and you do not want to mess with her. She and her husband, Brian, tried to have a baby on their own for 4½ years until they were diagnosed with unexplained infertility. Endless… Read More

Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story

Written by Rohan Narayanan on September 30, 2021

I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion with so many questions about this rare disease and how little information seemed available. Mostly, I felt alone. Feeling alone… Read More

Tatton Brown Rahman Syndrome Community and NORD® Launch Natural History Study of Tatton Brown Rahman Syndrome (TBRS)

Written by Rohan Narayanan on September 22, 2021

Research study is open to participants worldwide to advance understanding and treatments for TBRS, a mutation of DNMT3A, causing overgrowth, autism, intellectual disabilities, orthopedic concerns, cardiac issues, and a variety of other health and developmental concerns.

Stanfordville, New York, September 21 — Tatton Brown Rahman Syndrome Community and the National Organization… Read More