Caring for those in Need

Rare Does Not Mean Alone

Parenting a child who has special needs can feel lonely and isolating at times. You and your family are on a journey that likely looks and feels very different than other families around you. It may feel like extended family and friends cannot fully relate to the challenges you face.

BY Michele Ertl-Rosner | August 2018 | Category: Healthcare

Rare Does Not Mean Alone

When your child is diagnosed with a rare disorder, you may find that many medical professionals are not familiar with your child’s diagnosis. At times, it can feel like you have nowhere to turn for information and understanding, but there are supportive connections and resources available.

While raising a child with a rare disorder can be a journey with unique challenges, we don’t always have to travel alone. Fortunately, there are various opportunities to make both one-to-one and group connections, and technology has made it easier to find and connect with others who have many of the same concerns as you.

Here are some strategies for finding other parents who have a child with the same diagnosis, as well as ideas for making the most of those invaluable connections.

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