7151 N Main St #2, Village Of Clarkston, MI 48346
| Our mission | Supporting patients and families while promoting research, education and awareness. |
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| Ways to help | Awareness AmbassadorsOne of the major hurdles we have to cross is raising awareness of amyloidosis. We are passionate about doing this and our grass roots Awareness Ambassadors play a vital role. Most patients were misdiagnosed several times before getting a correct diagnosis. We provide patients with the tools to go back to these practices and educate the physicians, so it won’t happen again. There are many ways, from local to widespread, to raise awareness of amyloidosis. We provide you with all the information you need to go out into your community and beyond to raise awareness.Action AdvocatesAs patients and caregivers with a rare disease, we understand the many challenges that you are dealing with. Advocacy involves speaking out on issues that you care about and offering ways to improve upon them. As part of our Action Advocates team, we can guide you on how to advocate for important health issues that affect the amyloidosis community. Whether you are a patient, caregiver, doctor, nurse or friend, your opinion does matter. Advocacy takes place on every level, from local to national. Together we can make our voice heard. |
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| About us | The Amyloidosis Foundation began with the vision of two patients, Don Brockman and Dennis Krysmalski. Don’s desire to support research and Dennis’s commitment to support patients and increase awareness has been the driving force behind the foundation for the past 16 years. Don’s widow, Mary O’Donnell, has led the foundation to become the success it is today. Our key priorities are: providing research grants for all types of systemic amyloidosis; raising awareness in the medical field for an earlier diagnosis; educating medical professionals through our Grand Rounds program and attendance at medical conferences; and empowering patients through our comprehensive range of services, including accurate up to date information. |
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🚨 REGISTER FOR OUR SPRING WEBINAR 🚨
Progress in Amyloidosis: 2022
July 13th at 2:30 pm ET.
REGISTER HERE👉 https://bit.ly/ALWebinarSpring
New functional marker in AL - The 6 min walk test -A baseline distance of ≥350 m independently predicts better survival. And 33m improvement after Rx is prognostic- congratulations to @olivercohen19
Now published in @Open_HeartBMJ @BritishCardioSo
Help Amyloidosis Foundation, Inc. every time you shop: https://iGive.com/pSpIPJr #iGiveDoYou
Ionis announces eplontersen met co-primary and secondary endpoints in interim analysis of the Phase 3 NEURO-TTRansform study for hereditary transthyretin-mediated amyloid polyneuropathy (ATTRv-PN) $IONS https://prn.to/3n1cqJ5
Study Update: AT-01 for Systemic Amyloidosis https://bit.ly/3xLmivg #AT01 #amyloidosis #medicalresearch #diagnosis #systemicamyloidosis @Amyloidosisfdn
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