The year 2021 took many of us on a roller coaster ride filled with fear, hope, relief, and frustration. We took tentative steps toward resuming safe in-person interactions. We sifted through changing information on vaccines and variants. People with Gaucher disease did it all while navigating the challenges of living with a rare disease.
In response, the National Gaucher Foundation continued to provide financial support for people with Gaucher. We worked with Gaucher experts to offer relevant information. We expanded our global community during a time marked by isolation.
This blog post offers a glimpse at how our efforts and offerings evolved during 2021. We invite you to review our full 2021 Impact Report for more details. The report also includes heartfelt testimonials from patients living with Gaucher disease.
Direct Financial Support for Gaucher Patients
This year marked 28 years of providing patient assistance for Gaucher patients and their families. Our National Gaucher CARE Foundation (NGCF) is the only federally approved patient-assistance program that is disease specific. In 2021, we awarded $2.1 million in individual grants through two programs:
- CARE, which assists with the cost of eligible insurance premiums
- CARE+, which helps patients and their families afford eligible out-of-pocket expenses
Individuals with Gaucher disease who meet certain requirements may apply for financial assistance.
Introducing a sustainer giving program
NGF launched the Stepping Stones sustainer giving program this year. The goal of this long-term strategy is to produce a predictable stream of revenue for our patient advocacy initiatives. That allows us to spend more time supporting our community and less time fundraising. Stepping Stones focuses on the CARE programs and making financial help available for the 6,000 people living with Gaucher disease in the United States.
Engagement and Education of Our Gaucher Community
For decades, we have provided useful and thought-provoking content. Our audience includes patients, families, and professionals who live and work as part of the Gaucher disease community. But we recognize that in today’s world, there are many information avenues available. This year, we used our website, print publication, social media, and monthly blog posts to reach our audience in a variety of ways.
In 2021, we focused our engagement and education efforts on:
NGF website redesign
Our online platform reaches people across the world and appears in the top rankings for web searches. But to deliver the most informed and accessible information for the Gaucher community, we launched a new and improved website in 2021.
Our website redesign utilizes the newest technology to provide resources that are user-friendly and easy to find. Since the website launch, we’ve seen growth to our web traffic and weekly visits from a global audience.
Health optimization tools
Individuals with Gaucher disease live their best lives when they can effectively manage the disease and its symptoms. We help our community members optimize their health.
In 2021, 13,000 new users visited our treatment-related pages. We also had approximately 5,000 unique pageviews of our treatment finder page. Our database connects patients with Gaucher specialists and treatment centers across the United States.
The most current coronavirus information for Gaucher patients
For the second year, we collaborated with the U.S. Physician Working Group on the Impact of Gaucher Disease and COVID-19. This group of Gaucher specialists looks at every aspect of COVID-19 and the impact on Gaucher patients. Their expertise provides us with the most relevant COVID-19 information for our community.
Relevant content for people living with Gaucher disease
The NGF blog continues to offer monthly posts. Our content highlights relevant news and information for people living with Gaucher disease. Our goal is to educate and support the Gaucher community. This year, our topics included how to select health insurance, what you should know about reproductive health and Gaucher, and how to eat right while living with a rare disease. You can search our blog posts online.
Continued Growth of Gaucher Disease Patient Advocacy
Having a strong and supportive community can be empowering for people living with Gaucher disease. NGF recognizes that and has been advocating on behalf of the Gaucher community for over 37 years.
This year, we lobbied congressional and state legislative leaders. Our goal was to raise more widespread awareness of Gaucher disease and other rare diseases. People living with rare diseases face unique healthcare challenges, especially regarding access to healthcare.. As more communities like NGF voice our concerns, we hope legislators will take steps to support the needs of the rare disease community. See our blog How the American Rescue Plan and State Health Insurance Laws Affect You
Looking Ahead to our Impact in 2022
As we continue our mission to support, educate, and advocate, our digital growth shows that we are reaching people living with Gaucher disease worldwide. We are proud to be a trusted resource for Gaucher patients and their families. But our success relies on continued advocacy, partnerships with Gaucher experts, and the support of our community.
To help us increase the impact we make in 2022, please consider making a gift. Your generosity makes it possible for us to continue this essential and effective work. We are grateful for the support, involvement, and contributions our community offers.
