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Aplastic Anemia & MDS International Foundation | answers. support ...

Resource for patient assistance and emotional support; includes educational materials, medical information, and research.

Link: aamds.org

  • Advancing Clinical Trials through Expanded Patient Input | Aplastic Anemia and

    aamds.org 10 Aug '16, 8pm

    “PACCT stands for Patient Advisory Committee on Clinical Trials, and the + sign in the abbreviation indicates health services research, a distinct and additional part of the program. Last year, PCORI (Patient Centered Outcomes Research Institute) funded our PAACT+ proposals. It has be...

  • "AA&MDSIF really helped my family and me through a tough a critical time in our lives"

    Patient Inspires Workplace Giving | Aplastic Anemia and

    aamds.org 07 Aug '16, 3pm

    I was just past my 19th birthday when my family and I realized that something was severely wrong with my health. Throughout high school I was always fatigued, and bruised very easily. I also experienced what I now know as petechiae – little red dots all over my body caused by bleeding...

  • “The doctor told me that he’d never heard of anybody excited to get a bone marrow transplant.” https://t.co/frhgKZYwZ1

    Bryce Harding Moves Past Aplastic Anemia | Aplastic Anemia and

    aamds.org 13 Jul '16, 3pm

    Diagnosed with aplastic anemia in 2012, Bryce Harding is back on track with life. In 2012, Bryce was working in a silver refinery. Friends had been telling him for months that he didn’t look well, but he resisted making an appointment with the doctor. After nearly passing out at work ...

  • Caring for the Caregiver | Aplastic Anemia and

    aamds.org 30 Jun '16, 3pm

    Don’t deny or ignore the fact that being a caregiver will have an effect on you. The stress of caregiving can have a similar impact on the caregiver. “Be aware that being a committed caregiver carries with it physical and emotional health risks. There’s significant data that tells us ...

  • Biology Teacher Battles PNH:

    Biology Teacher Battles PNH | Aplastic Anemia and

    aamds.org 31 Jul '16, 3pm

    Steve Coffin considers himself lucky. Diagnosed with PNH in 2015, he is grateful that he has responded well to eculizumab (Soliris®) treatment. “I’m incredibly fortunate,” he said. “It’s doing exactly what it’s supposed to do.” Steve, a 34-year-old avid runner, always lived an active ...

  • MDS Follows Two Misdiagnoses:

    Follows Two Misdiagnoses | Aplastic Anemia and

    aamds.org 24 Jul '16, 3pm

    I am 76 years old and have had MDS for 13 years. I have the 5q deletion and am classified as relatively low risk. I have been treated with erythropoietin (Procrit®), G-CSF, (Neupogen®), azacitidine , (Vidaza®) and deferoxamine (Desferal®). My hemoglobin ranges from 9.2 to 7.2. I have ...

  • Community Events | Aplastic Anemia and

    aamds.org 16 Jun '16, 3pm

    Formerly known as Communities of Hope, these groups are a valuable source of local peer-to-peer engagement, connecting patients and families with each other for mutual compassionate support. March for Marrow Walks Local organizers hold walks large and small in communities of all sizes...

  • Caring for Yourself | Aplastic Anemia and

    aamds.org 26 Jun '16, 3pm

    Taking care of your body, mind and spirit while living with bone marrow failure disease covers a lot of seemingly unrelated areas, but to ensure the quality of everyday living, you will want to pay attention to all of them. Some topics cover physical health and some cover emotional he...

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