How communities can support and empower those with rare diseases

(JNS) — Shaya Feiner may not communicate with words, but his face tells a story. His mother, Aviva, has learned to recognize the joy in his expressions—the pride that lights up his face when she tells others that “Shaya was born in Jerusalem.”

The 17-year-old’s story began in Israel, where he was born healthy. But complications quickly arose, leaving him with a severe neurological condition and complex medical needs that have shaped his daily life ever since.

All this time, Aviva and her husband, Rabbi Eytan Feiner, have devoted themselves to making sure that Shaya receives the care he needs, which included leaving their home in Jerusalem when he was less than a year old. Their move to the United States to access early intervention benefits was a decision driven by love and necessity, yet Israel remained home in their hearts and returning was always a priority.

When Shaya was just a toddler, the Feiners made their first trip back as a family. That visit became the foundation of an annual Chanukah tradition—one that ensured Shaya could experience and connect to the place where he was born. Yet traveling with a child who has complex medical needs presents enormous logistical challenges.

In Israel, that burden is greatly lifted by Yad Sarah, a nonprofit organization that provides medical equipment, transportation and support services, largely staffed by volunteers.

Each year, the Feiners are able to return to Israel, confident that the critical medical infrastructure Shaya needs will be waiting for them. “What Yad Sarah does under one umbrella takes multiple organizations to accomplish elsewhere,” his mother said. “Without them, I don’t even know how we’d manage when traveling; we’d have to rent accessible cabs, carry extra medical equipment and hope to find a hospital bed.”

Shaya’s story is just one of millions. Families caring for individuals with rare diseases face daily challenges that go far beyond medical care—navigating logistical obstacles, financial burdens and the isolation that can come from a world not built to accommodate their needs.

Rare Disease Day, observed on Feb. 28, shines a light on these challenges and the importance of community-driven solutions. But awareness is not enough. For families like the Feiners, practical support is what allows them to participate in life’s meaningful moments without being defined by their child’s diagnosis.

In the Jewish community, where genetic conditions such as Tay-Sachs, familial dysautonomia and Canavan disease are more prevalent—and where values like chesed (“kindness”) and communal responsibility drive action—there are community-based support systems built into the fabric of society. Yad Sarah is an example of this in action. It provides a full ecosystem of care in the form of free or low-cost medical equipment, accessible transportation, emergency response services and in-home support. This comprehensive approach eliminates the bureaucracy that too often delays essential services for those who need it most.

Beyond alleviating the logistical and physical challenges of caring for a loved one with a disease, the organization enables families to fully participate in communal life rather than being sidelined by medical constraints. It’s this support that makes it possible for the Feiner family to visit Israel without anxiety. It means that Shaya can be comfortable and safe, and his parents can focus on what matters—being together, creating memories and connecting to their home.

This is what true community care looks like. It’s not just about meeting medical needs; it’s about guaranteeing that no family feels alone in their struggles and that no individual with a rare disease is defined solely by their condition.

Rare Disease Day is about putting this model into action, and the Jewish community has built a system the rest of the world can learn from. But there is still much work to be done. More communities, Jewish and non-Jewish, must invest in centralized, comprehensive care that removes bureaucratic barriers and streamlines essential services. Fragmentation creates unnecessary suffering; unity creates accessibility.

A society that uplifts its most vulnerable members becomes stronger as a whole. To achieve this, expanded efforts to make travel, education and religious participation more inclusive are essential. Whether through adaptive transportation, improved medical accommodations or greater public awareness, no one should be left behind.

The success of Yad Sarah proves that comprehensive, community-driven solutions are possible. It’s time for more entities to follow suit.

Philip Bendheim is head of international affairs at Yad Sarah and a member of its Board of Overseers.