NGF Community Blog

Clinical Trials & Gaucher Disease: Phases, Types, & What You Should Know

Medical research has always been important for furthering our understanding of disease. Through the completion of clinical studies, doctors and scientists identify new and effective treatment methods for some of the rarest diseases, including Gaucher disease. Gaucher Disease Clinical Trials The mainstay of Gaucher disease treatment—enzyme replacement therapy (ERT)—was developed thanks to clinical trials. More… Read More »

Topics: About Gaucher Disease, Gaucher Disease Research

Repealing the Affordable Care Act & The Effects It Can Have

What is the Affordable Care Act The Affordable Care Act (ACA) represents one of the most substantial changes to our nation’s healthcare policy since the creation of Medicare and Medicaid. The legislation was first introduced and approved by a Democratic congressional majority. The Obama administration signed the ACA into law on March 23, 2010. When… Read More »

Topics: Insurance

What You Should Know About At-Home Genetic and Ancestry Testing Kits

Genetic testing, including ancestry testing, has increased in popularity in recent years thanks to direct-to-consumer genetic testing kits. In the past, consumers had to go through healthcare providers for any type of genetic testing. Now, anyone can order an inexpensive DNA test online from one of several genetic testing companies. In 2018 alone, over 12… Read More »

Topics: About Gaucher Disease

Gaucher: SRT, ERT & Drug Interactions | National Gaucher Foundation

Gaucher Disease: Enzyme Replacement Therapy, Substrate Reduction Therapy & Potential Drug Interaction Side Effects Substrate reduction therapy (SRT) first debuted as an alternative method of treating Gaucher disease in 2003. At that time, miglustat (Zavesca®) was the only known oral medication capable of managing Gaucher disease symptoms to prevent the condition from worsening. In 2014,… Read More »

Topics: About Gaucher Disease, Gaucher Disease Research, Gaucher Disease Treatment

Ambassador Spotlight: Lauren Edwards

What were the events leading up to your diagnosis? What first led me to my diagnosis was getting a required blood test prior to starting Accutane, an oral medication for acne. When my results arrived, I discovered that my iron levels were extremely low and that I was anemic; I was then encouraged to see… Read More »

Topics: About Gaucher Disease, Ambassador Spotlight

Tackling Mental Health Challenges Within the Gaucher Disease Community

Unlike other health problems, which may only affect one specific part of the body, mental health issues have the potential to impact a person’s entire life. From social well-being to emotional response, your mental health directly impacts your mood, behavior, and patterns of thinking. Mental Health and Chronic Diseases According to the World Health Organization,… Read More »

Topics: Living With Gaucher Disease

Parkinson Disease Risk in the Gaucher Population

Leah Zaretsky, a Master’s Candidate in Genetic Counseling at Mt. Sinai, composed the below post. Leah shares the research findings from her thesis study survey entitled Knowledge and Attitudes of Parkinson Disease Risk in the Gaucher Population. View her presentation here. This presentation is property of Leah Zaretsky and no portion should be used without… Read More »

Topics: Gaucher Disease Research

Ambassador Spotlight: Kelly Burns

What were the events leading up to your diagnosis? I had been getting lots of nose bleeds as well as experiencing a lot of bruising and extreme fatigue. I was a teenager. I chose to hold off on starting treatment since I was stubborn and didn’t want bi-weekly infusions to disrupt my schedule. What has… Read More »

Topics: About Gaucher Disease, Ambassador Spotlight

Bone Disease, An Often-Overlooked Complication of Gaucher Disease

The more we learn about Gaucher disease, the more we understand how it affects complex cellular interactions among various body systems. As familiarity with Gaucher disease grows, more people recognize the hallmark symptoms of this disorder, such as spleen and liver enlargement and problems with certain blood components. But difficult-to-treat bone disorders are also common… Read More »

Topics: Living With Gaucher Disease

Ambassador Spotlight: Ilaina Davidson

NGF Ambassador Ilaina Davidson has two young children with Gaucher disease. Rebecca (10) has been on ERT for 8 years and Abby (8) has been receiving treatment for 4 1/2 years. She, and daughters Rebecca and Abby, share their experiences and perspectives with us in this month’s Ambassador Spotlight.   What were the events leading… Read More »

Topics: About Gaucher Disease

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