Having a child with a rare medical condition affects not only the parents of the child, but reverberates through to extended family, friends and even acquaintances. It is easy to forget that you too may go through a range of emotions during the first few days and weeks of uncertainty. You may even share in the grieving process before coming to terms with the "new normal" that your friend or family member is learning to accept. That is okay. But know that YOU play such an important role in providing the support that is needed throughout this journey.
Over time, we will add more information to this page so that friends and family can have a place to turn for resources. In the meantime, visit the links at the right to learn about ways you can help.