International Gaucher Day puts focus on equity in care worldwide
IGA campaign stresses access to diagnosis, treatment, information, and support
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This week, on Oct. 1, the International Gaucher Alliance (IGA) is marking International Gaucher Day with the theme “Equity in Action,” highlighting that people with Gaucher disease may be at different stages of their journey and should have access to information, care, and support wherever they are.
This year’s day of advocacy and awareness carries the message, “Wherever you are in your Gaucher journey, we are here to support you.” The campaign emphasizes that support should be available regardless of where someone lives or where they are in their Gaucher journey.
“For people affected by Gaucher disease, where you are has two meanings,” the IGA wrote in a press release. “It can describe where you live in the world – and the healthcare system and resources available to you – but also where you are in your Gaucher journey: looking for answers, newly diagnosed, seeking treatment, living with the disease or supporting a family member.”
“People affected by Gaucher disease can be geographically isolated and at very different stages of understanding, diagnosis and living with the condition,” the IGA added. “The [Equity in Action] campaign turns this reality into a promise that geography should never determine the support a patient can receive.”
Campaign urges Gaucher community to help spread awareness
The IGA is encouraging members of the community to spread awareness on social media and has created a campaign toolkit with resources to help share the message.
“Where a person is born should not determine whether they can receive a diagnosis, find reliable information or access the treatment they need,” said Tanya Collin-Histed, IGA’s CEO. “Equity in Action means turning that belief into practical work – supporting patients, strengthening communities and advocating for access wherever it is needed.”
“Wherever someone is in the world, and wherever they are in their Gaucher journey, we want them to know that they are not alone,” Collin-Histed added.
Gaucher disease is a genetic disorder in which the body cannot properly break down certain fatty molecules. This can lead to symptoms including enlarged organs, blood abnormalities, and bone problems. Rarer and generally more severe forms of the disease also cause neurological symptoms.
A person’s Gaucher journey may involve searching for answers, receiving a diagnosis, accessing treatment, or learning to live with the disease. Each person and family may face different questions and challenges, and access to treatment, care, and information can vary depending on where they live.
IGA works to improve access to diagnosis and treatment worldwide
The IGA works with patient organizations around the globe to strengthen local advocacy efforts, build relationships with healthcare professionals and policymakers, and help communities advocate for sustainable access to diagnosis and treatment. It also supports and advocates for patients who cannot access treatment through their national healthcare systems.
“By joining us on 1 October, you can help amplify the voices of the Gaucher community, raise awareness of the inequalities that still exist and demonstrate that meaningful change requires collective action,” the IGA wrote in a cover note to media.
In the U.S., October is also recognized as Gaucher Awareness Month. The Gaucher Community Alliance is marking the month with a number of initiatives, including educational webinars, social media initiatives, and storytelling campaigns. From Oct. 11-13, the group will be hosting a Gaucher Community Patient and Family Conference in Chandler, Arizona, in the Phoenix area.
Gaucher disease disproportionately affects people of Ashkenazi Jewish descent, and this period of Gaucher awareness comes shortly after the Jewish High Holy Days.
“This is the New Year in the Jewish Calendar, and we pray for ourselves, our family, our friends, and the whole world for healing, success in our chosen endeavors, and peace. I, of course, extend that to our global Gaucher Community,” Robin Ely, MD, clinical director of the National Gaucher Foundation, said in a written statement to Gaucher Disease News.
