My daughter has a rare disorder. Are there any programs that can help get things she needs?
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Contact NORD--National Organisation of Rare Disorders. Do you also have a CSHN office in your state? CSHN stands for Children w/ Special Health Needs. My daughter is a meningococcemia survivor/Left Foot Amputee w/ multiple neurological sequelae and non-verbal learning disorders, and the only one in VT that I can find, too. Look for an online support group, as well. In Vermont, where we live, there is an organisation called Parent to Parent that I have found invaluable. Contact them and ask for a referral in your state. Also contact your local VNA or the discharge planner at your local hospital for referrals. Talk to your pediatrician and to the person in charge of SPED in your school system. These are all founts of good information. E-mail me should you need further info or support. As a member of Parent to Parent, I'm trained to be a peer support person.and also have many, many years of R&R experience (Resource and Referral). Blessings upon you and your family!
That depends on the disorder. Without knowing, I can't answer.
Try the site below. You answer a long questionnaire and at the end it will tell yuo what government benefits you may be eligible for and how to apply. Hope this helps. Try googling the disorder and see if there any foundations
This disorder may have a support group. Check it on the internet. They can point you to help.
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