Rare Disease Day Is February 28
Tarpon Springs, FL, February 25, 2015 (Newswire.com) - It's Rare Disease Day this Saturday, February 28, an annual event designed to raise awareness with the general public and decision makers about rare diseases and their impact on patients' lives.
Last year Denise Crompton penned “Diagnosis: Rare Disease.” This book offers a compelling look at 13 families who received the diagnosis no parents ever wants to hear. It is a heartbreaking exposé of what life is like for families that have a member with a rare disease. Crompton details the journey of each family, including her own, impacted by a rare disease called Mucolipidosis.
Sheryl Crosier is the author of "I Am Not a Syndrome - My Name is Simon," a gripping book that details the story of her son born with Trisomy 13.
Starting Feb. 26, in honor of this important day, publisher All Star Press (Books That Change Lives) is offering two of the best books in the field at a significant discount. “Diagnosis: Rare Disease" is available in paperback for only $11.97. "I Am Not a Syndrome - My Name is Simon" is available for only $9.97 plus shipping and handling.
"As the mother of two children living rare and an advocate working on rare disease issues, I immediately recognized the importance of Denise Crompton's book to both the rare disease community and to medical professionals," explained Patricia Weltin of the Rare Disease United Foundation. "The journey of rare is isolating. 'Diagnosis: Rare Disease' speaks to the journey we are all on, no matter the rare disease. Through these stories we all have a voice. Through our collective voices, we have hope.
Both works are a must-read for medical professionals who wish to learn how to work with families in these difficult situations. Families dealing with a rare disease will recognize themselves in these two books.
"Struggling with the fragility of Simon’s life was one thing. However, struggling with the popular pragmatic culture that measures human life in terms of dollars rather than dignity, is quite another," stated Rev. Robert J. Hermann, Bishop Emeritus in Residence, St. Louis Archdiocese of St. Louis. "Yet, all along the way, again and again, Sheryl and Scott Crosier discovered and were made disciples of 'Life.' This story celebrates both the pain and the joy of love!"
A portion of proceeds from both books benefit charities throughout the country that support the rare disease community.
The book sale on these two publications runs from February 25 through March 4, 2015 and is available only through the All Star Press website.
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Tags: book sale, child disorders, genetics