Amazing Patients and Caregivers

One of the greatest thing about working at Rare Patient Voice is getting the opportunity to meet so many amazing people. Let me tell you about two.

Kathryn Ames (I’ll mention her by name as she has given me permission) is a terrific mom. She struggled when her son Nicholas, who has severe Hemophilia A, wanted to crawl like any other toddler. She created a line of padded pants, and other clothes, and called them Bruz Wear. What a great way to help others while she was coming up with an ingenious solution to the problem she saw! I encourage you to go to her website:

Another of our members told me that regular rules and regs generally don’t apply to her. She lives in the New York City area. One New Year’s Eve, she decided she wanted to see the famous ball drop. She got in line, worked her way to the front, and security staff told her she couldn’t go further. But somehow she did, her kids saw her on TV right up front next to the celebrity hosts! If having children with hemophilia couldn’t stop her, she wouldn’t let fierce NY security stop her, either!

About the author: Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 30 years experience in marketing research, and more than 15 years in healthcare marketing research.

{ 1 comment… add one }
  • Waseem Hassan September 6, 2015, 4:12 pm

    I am an Aneurysmal Bone Cyst (Skull, Temporal and Sphenoid Region) with multiple infection and several major/minor surgeries in the last 2 years. Drop a text,if you need further information. thanks and best regards.

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