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.
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.
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.
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.
New Urgency for Treating Hereditary ATTR Amyloidosis with Polyneuropathy
Neurology Advisor, August 2019 – When dealing with a rare disease like hereditary ATTR amyloidosis an early and accurate diagnosis can have a profound effect on a patient’s disease journey and overall quality of life. It’s important for physicians to recognize the various red-flag symptoms and early signs of polyneuropathy early, especially since there are now therapeutic tools available to help treat this disease.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.