October is Gaucher Disease Awareness Month, and all month the National Gaucher Foundation will be sharing stories and updates centered around the Gaucher Community.
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Behind the Mystery of Gaucher Disease
For Gaucher Disease Awareness Month, The Balancing Act morning show, released an episode called āBehind the Mystery of Gaucher Diseaseā as part of their recurring “Behind the Mystery” series that explains the complexities surrounding rare diseases.
This ground-breaking episode unites experts from patient advocacy, healthcare, and industry. It also showcases the poignant journey of Fan, an individual living with Gaucher disease, whose inspirational story offers hope for the patient community.
The episode covers important topics ranging from the current treatment landscape to the future of research, including groundbreaking research on gene transfer therapies aimed at reducing the need for frequent interventions and improving quality of life for people living with Gaucher disease.
The episode aims to demystify Gaucher disease and take the audience on a journey through the lens of awareness and advocacy, addressing its challenges along the way.
During the episode, we meet Dr. Ozlem Goker-Alpan, an expert in Gaucher disease and Founder and CEO of the Lysosomal & Rare Disorders Research & Treatment Center; Cyndi Frank and Aviva Rosenberg, Co-Founders of the Gaucher Community Alliance; Jim Howley, Global Lead of Patient Advocacy and Engagement at Prevail Therapeutics; and Fan, who was diagnosed with Gaucher at the age of two.
Watch the Episode
Gaucher Journeys
Gaucher Disease Treatment Center Finder
The NGF Treatment Finder includes more than 50 Treatment Centers across the United States.
There are Treatment Centers across 30 states and the District of Columbia, each including contact details and additional information.
10 Steps to Greater Gaucher Awareness
If you’re new to the Gaucher community, or just beginning your journey, you may feel overwhelmed āĀ we understand completely.
Here are 10 steps you can take to get started:
- Understand exactly what Gaucher disease is and its associated types: Type 1, Type 2 and Type 3.
- Learn the symptoms of Gaucher disease, as well as related conditions.
- If you or a family member may be at risk, find out about testing for Gaucher disease, including how it is diagnosed, who should get tested, and how the testing’s accuracy.
- Read about Gaucher disease treatments: Enzyme Replacement Therapy (ERT) and Substrate Reduction Therapy (SRT).
- Use the NGF’s Treatment Finder to find a Gaucher specialist by location, name, or specialty.
- Paying for Gaucher disease treatment is a challenge for most families. Learn about Financial Support resources to help ease the burden.
- Help build a Treatment Team for your Gaucher disease management and care, with support from Gaucher specialists, a primary care physician, and more.
- Understand you’re not alone. Connect with other Gaucher patients and their families by watching and reading their Patient Journeys.
- Connect with the talented professionals of the National Gaucher Foundation. Contact us and get the help you need as you go on this journey.
- If you’re able, give back. Join the NGF’s Stepping Stones Sustainer program or make a donation to provide needed resources to the patient community.
Make Your Impact Felt
Your donation to the National Gaucher Foundation helps to increase awareness of Gaucher disease and provides needed resources to the patient community.
By making a one-time gift or joining the Stepping Stones Monthly Sustainer program, you can make an ongoing impact among those living with Gaucher disease across the country.
Give today and help make an impact. 💙
