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Rare But Not Alone

A supportive community helps people cope with rare diseases and rally together for a greater quality of life.

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Community support informs, heals, relives, and transforms.

For Cody Hanson and his sister, who at the time were the only people in the world known to have Carey-Fineman-Ziter syndrome, finding solace was only possible in community.

“I am going to find other people who are like us, there has to be more.” Hanson said in a virtual panel discussion with the National Organization for Rare Disorders (NORD) on the importance of having a support network.

Two years later, with the help of his physician and the U.S. National Institute of Health, he found several families from all over the world who were living with the disease, enduring the same grief, confusion, frustration and uncertainty. And together they met in person and formed a community that changed their lives forever.

“That experience, is what pushes me to raise awareness to help others learn how to deal with the condition and know that they are not alone,” he said.

The feeling of not being alone, and having a community or even a buddy whether in person or virtual, is key to being able to cope, said Julie Raskin whose son has congenital hyperinsulinism. Being together with a huge support group has taught her and Ben how to lead a life that’s easier and better because they can share experiences and learn from one another.

“Ben has grown up in a cocoon of support and because of that, all of the physical challenges he has and the disabilities he has are so much less harsh because he has a community of people he knows who love him and he can commune with the rest of the rare disease community, and make friends with other young adults living with his rare disease,” Raskin said.

Beyond the emotional healing that such groups provide, they also take collective action to raise awareness and find new treatments. Patient organizations are typically connected to a network of clinical care centers with physicians and researchers who know the specifics of each disease.

Patient groups often are the driving forces behind patient registries, a platform for collecting valuable data about rare diseases – something that is in short supply. One such registry, the IAMRARE Registry Program works with patients, advocacy groups and organizations such as the U.S. Food and Drug Administration to learn about patient experiences that ultimately inform and shape medical research and the creation of new products to make living with a disease more manageable.

Stacy Lloyd serves as Vice Chair of VHL Alliance Board, a group focused on VHL disease, a rare condition that causes blood vessel tumors. The value of community support can’t be overstated, she said. 

“I have never felt like so many people had my back when it comes to my health before,” Lloyd said.