News

How to Manage Peripheral Neuropathy Pain When Interacting with Children

FAP News Today, October 2019 – No one wants to be in pain when spending time with their loved ones, especially young, active children. Unfortunately, that can often be the case for hereditary ATTR amyloidosis patients. When it comes to physical issues such as these, caregivers play an important role to help patients so that they can enjoy activities with friends and family members. Learn more about how to avoid having interactions with children hindered by neuropathy.

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Caring for the Caregiver: How to Find a Balance

Daily Herald, October 2019 – Caregiving can be a rewarding job, but it can also be time-consuming and stressful. It can even be a full-time job on top of your existing career, resulting in multiple changes to your daily life such as keeping track of your loved one’s medications and helping them with daily tasks. Taking quality time for yourself is a critical part of being a caregiver. Read more tips on how to help find balance, including surrounding yourself with a support network.

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How to Manage Neuropathy Symptoms While Traveling

FAP News Today, October 2019 – For caregivers of hereditary ATTR amyloidosis patients, traveling can require significant planning and coordination for a smooth trip. Traveling can worsen patients’ neuropathy symptoms, causing significant pain when sitting in cramped spaces for extended periods of time. Large airports can also be troublesome as patients may need to walk far distances, aggravating their neuropathy pain. Read more tips about how to help manage neuropathy symptoms and ensure comfortable and safe travel.

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Important Tips to Avoid Caregiver Burnout

News Medical Life Sciences, October 2019 – As a caregiver for a patient with hereditary ATTR amyloidosis, you may begin to take on new responsibilities that can quickly lead to burnout. You’re caring for a loved one each day, taking them to doctor’s appointments and monitoring their symptoms. If you’re burnt out or not taking care of your own health, you’ll likely struggle to provide the quality care that your loved one needs. Read about tips to help avoid caregiver burnout and suggestions for how to take time for yourself whenever possible.

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It’s a Small World

Pharma Times, September 2019 – Read more about the impact of digital communication on the rare disease community and how it’s greatly improved the patient experience. With information and resources available at the touch of a button, technology now allows patients to connect more easily with each other and for the pharmaceutical industry to also interact with the rare disease community.

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Massage Therapy May Relieve Neuropathy Symptoms

FAP News Today, August 2019 – Studies have shown that massage therapy may be beneficial for patients who are experiencing peripheral neuropathy symptoms and could potentially help prevent further nerve damage. Learn more about why this therapy is thought to work and how you can start self-administering massage therapy today.

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Understanding The Caregiver Journey

Grand Rapid Business Journal, August 2019 – Learn more about the caregiver journey and how physical and mental changes in your loved one can impact the type of support they may need and your role as a caregiver. Every caregiver’s experience is unique, and it can be helpful to arm yourself with tips for navigating the caregiver journey and preparing for what’s to come and how it’s critical to care for both your loved one, as well as yourself. 

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Get Familiar With Your Family Health History

KARK.com, July 2019 – Read more about why it’s important to have an open conversation with your family about their medical history and learn some tips as to how to go about initiating this difficult conversation. It’s possible that you may have a higher health risk for certain conditions due to your family history, so you can empower yourself and start to take the necessary steps to protect your health with this important initial conversation.

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Man’s rare genetic disease traced back to three centuries of County Donegal ancestry

Irish Central, August 2019 – What can your family history tell you about your health? When Greg received a confirmatory diagnosis of hereditary ATTR amyloidosis, he traced his family lineage back centuries to find that more than 600 family members may have been impacted by the disease.

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Twenty-Seven Family Members Tested in One Day Thanks to Young Caregiver Inspired by New Treatment

FAP News Today, August 2019 – Growing up with family members living with hereditary ATTR amyloidosis, Angel decided to get tested to see if she carried a genetic mutation associated with the disease. She didn’t stop there. Angel organized a genetic testing day, through the hATTR Compass Program, with 27 of her family members.

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Caregivers, Polyneuropathy, and Sun Exposure

FAP News Today, August 2019 – During the summer months, hot temperatures and direct sunlight can make peripheral neuropathy symptoms worse for patients with hATTR amyloidosis. Learn about practical ways caregivers can help patients manage the effects of increased sun exposure on their limbs so that the season can be more enjoyable.

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Genetic Testing Program for hATTR Expanded

NeurologyLive, August 2019 – Akcea Therapeutics and Ambry Genetics have expanded its hATTR Compass partnership program that provides support and resources to patients, caregivers, family members and healthcare professionals. Hear from a physician who has used hATTR Compass in their own practice why the program matters.  

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How Artificial Intelligence Can Detect Hidden Diseases

Vator, July 2019 – Can artificial intelligence be used to predict disease years before diagnosis? Komodo Health thinks so and has had notable success using its artificial intelligence algorithms to assess and identify early patterns of hATTR amyloidosis.

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After Diagnosis, This Man Traced the Origins of His Family’s Hereditary ATTR Amyloidosis

Patient Worthy, June 2019 – When Greg and his brother were diagnosed with hereditary ATTR amyloidosis Greg decided to learn as much as he could about the disease and trace his family medical history. Learn more about his inspiring story.

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Late-Onset FAP Associated with Misdiagnosis, Greater Severity, Brazilian Study Finds

FAP News Today, June 2019 – A Brazilian study, published in the Journal of the Neurological Sciences, found that patients were more frequently misdiagnosed and experienced more neurologic and cardiac complications if they have the late-onset form of hereditary ATTR amyloidosis.

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California Man Has Rare-Triple Organ Transplant

WHNT 19 News, June 2019 – Watch this video of an inspiring story of a hereditary ATTR amyloidosis patient who had to undergo a rare triple-organ transplant.

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Man’s quest for answers about rare disease uses genealogy to unlock secrets from the past

Los Angeles Times, May 2019 – When Greg received a confirmatory diagnosis of hATTR amyloidosis, he didn’t realize his hereditary disease would take him on a journey tracing his roots to his Irish ancestors.

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Advances in genetic testing shed light on one family’s hidden link to rare disease

Orlando Sentinel, May 2019 – After seeing her grandfather and mother impacted by hATTR amyloidosis, Angel organized genetic testing through the hATTR Compass Program for her extended family.

https://www.orlandosentinel.com/paid-posts/?prx_t=wwcFA3I04ABjQQA&&ntv_fpc=91cffcde-4587-4f2d-b61f-881073f7390f

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Eight Tips for Caregivers to Help Ease the Risky Business of Caregiving

Myrtle Beach SC, May 2019 – Research from nonprofit Transamerica Institute shows that over half of caregivers put their own health on the backburner when providing care. Here are some tips to maintain your own well-being while caring for your loved one.

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5 Genetic Testing Myths Debunked

Yahoo, May 2019 – As genetic testing gets more popular, it’s important to know the facts and debunk the myths about costs, testing length and whether it can affect your health journey. Check out hATTR Compass for no-cost, confidential genetic testing and confidential genetic counseling services at www.hATTRCompass.com.

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Pfizer gets U.S. approval for $225,000 a year heart drug

Pfizer press release, May 2019 – The U.S. Food and Drug Administration approved VYNDAQEL (tafamidis) and VYNDAMAX (tafamidis) to treat transthyretin amyloid cardiomyopathy, the first approved drug for the disease.

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Dos and Don’ts: Caring for Patients With Rare Diseases

Endocrinology Advisor, April 2019 – It’s important for physicians to make extra efforts to provide patients with rare diseases with the proper guidance and support that they need on their disease journey.

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Spokane Man Living with Rare Genetic Disease Finds Hope

KXLY Spokane, March 2019 – Learn about Chuck’s inspiring story of being diagnosed with hATTR amyloidosis and his patient journey.

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Balancing Work as a Caregiver with Your Job

Kiplinger, March 2019 – Being a caregiver to a loved one can often feel like a full-time job. Learn more about how to balance being a caregiver with your professional life.

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FAP More Diverse Than Previously Believed, Review Study Contends

FAP News Today, February 2019 – A review of 542 cases of hATTR amyloidosis suggest that the geographical occurrence of the condition varies more than previously thought.

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Advice for Long-Distance Caregiving Challenges

Next Avenue, February 2019 – When you live far away from a loved one who is need of care there are steps you can take to help you and your loved one

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Eye Issues Still Prevalent in Val30Met FAP Patients After Liver Transplant, Study Shows

FAP News Today, February 2019 – Studies have shown that eye problems due to hATTR amyloidosis, such as glaucoma, dryness, or accumulation of amyloid in the eye, are more prevalent among patients who have undergone liver transplants.

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FAP Patients in France With Upper Limb Nerve Damage Are Often Misdiagnosed

FAP News Today, December 2018 – A study in France found that out of 32 patients, 24 were initially misdiagnosed with a condition other than hATTR amyloidosis.

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A Guide to Caregiving at Any Stage

Next Avenue, December 2018 – Resources to help family caregivers at the early, mid and late-stages of caregiving.

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Backpack Health’s Application Helps People with Rare Diseases in Developing Countries

Medgadget, November 2018 – Learn more about Backpack Health, a health management app designed to help patients with rare diseases easily keep track of their health information.

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New Rare Disease Action Plan to Affect 21 Nations

Patient Worthy, November 2018 – The Asia-Pacific Economic Cooperation’s (APEC) Rare Disease Network has laid out a Rare Disease Action Plan, which includes 10 action steps with the goal to accelerate that rate of diagnosis for people with rare diseases.

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Before ordering a genetic test, get to know GINA

MedPage Today’s KevinMD.com, November 2018 – Learn more about the Genetic Information Nondiscrimination Act, a U.S. federal law to protect patients from discrimination based on their genetic testing outcomes

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