Mutual support for families of children born with anorectal malformations who have, or will have, a pull-through type surgery. Also for families of children with ostomies or incontinence. Newsletter, information, referral, phone support, and literature.
Read moreInformation about Wilson’s Disease. Mutual support and aid for those affected by the disease and their families. Promotes research into treatment and cure. Quarterly newsletter and telephone support network.
Read moreEmotional support and information for persons with alpha 1 antitrypsin and their families. Networking of members through newsletter, sharing of current information on treatments and research, pen pals, newsletter, and group development guidelines.
Read moreDedicated to improving educational success of children with special need and/or gifts and talents.
Information and resources on a variety of issues, including Attention Deficit Disorder, gifted children, behavior disorders, inclusion, etc. Advocacy and professional development activities.
Read moreFor people with ichthyosis, offers referrals, public and professional education, support group development guidelines, research on treatment and cure, newsletter, pen pals, annual conference, and dues.
Read moreResource and online group Opportunity for support and personal contact for those with MSUD and their families. Information on MSUD. Strengthens the liaison between families and professionals and encourages research and newborn screening. Quarterly newsletter.
Read moreOffers information, financial support for medication and referrals to other support groups
Read moreSupport for persons affected by pseudoxanthoma elasticum (PXE), their families and friends. Support groups, phone and mail contacts, literature, and quarterly newsletter. Maintains database of physicians. Supports, funds, and directs research.
Read moreSupport, information, and coping skills for families affected by Xeroderma Pigmentosum. Quarterly newsletter, referrals, literature, phone support, pen pals, conferences, advocacy, and summer camp for patients of all ages and their families.
Read moreMutual support, encouragement, and networking for families affected by Alstrom Syndrome, research scientists, and physicians. Facebook, Twitter, newsletter.
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