Support Groups for Families Affected by Sanfilippo Syndrome

Families affected by a rare disease such as Sanfilippo syndrome may struggle with stress, depression, and feelings of isolation. If you have a family member with the disorder, it can feel like no one truly understands what you’re going through, making it hard to connect with others. Having a good support network can help.

What is a support network?

A support network is made up of people who support you and your family. These are the people you can call when you have good news to share, need help, or just want to talk about what’s going on in your life.

We naturally form support networks with friends, family, and peers. But support can also be formalized as part of a support group or religious or professional organization.

How can a support network help?

Research has shown that having a good support network improves the ability to cope with stressful situations, as well as helps to alleviate emotional distress. A good support network can offer physiological and psychological benefits, including better cardiovascular health.

Where can I find support groups?

Our website, Sanfilippo Syndrome News, is a great place to start. We regularly publish articles about new research in the field and potential treatments being developed, as well as columns written by those affected by Sanfilippo. For example, Kelly Wallis chronicles the challenges of day-to-day life in her column, “Parenting a Sanfilippo Child, about her daughter Abby, who has Sanfilippo. Abby’s sister, Emily, writes from her perspective in her column, “Finding My Peace with Sanfilippo.”

It may be difficult to build a social support network when you are stressed. If you need help immediately and don’t have the time to build a social support network, a more formal support group may be the best place to start.

The following organizations offer information about treatment options and ongoing research, but also have networks that allow you to connect with other families:

• Sanfilippo Children’s Foundation
• National MPS Society
• Team Sanfilippo Foundation
• National Organization for Rare Disorders

Last updated: Feb. 11, 2020

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Sanfilippo Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.