MUMS Database
MUMS:
List of
Disorders
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{A}
{B}
{C}
{Chromosome}
{D - E}
{F - G}
{H}
{I - J}
{K - L}
{M}
{N - O}
{P}
{Q - R}
{S}
{T}
{U - Z}
The listed disorders represent the diagnoses of the children of families who are registered with MUMS National Parent-to-Parent Network. The number in parentheses indicates the number of children in the MUMS group with that specific disorder/condition. An * after the disorder means there is a
national or international support group for that specific disorder or
related disorders. The disorders are listed alphabetically and some
appear under more than one medical name.
Most of the families of these children have given their permission to
be matched with other families seeking contacts. Parents of children
with undiagnosed disorders can be matched by symptoms. Every disorder
or diagnosis has varying degrees of severity and when possible MUMS
tries to match families with parents of children with similar degrees
of severity, by age, by sex and also geographical area.
Because of the importance of confidentiality, MUMS can release names only
to other parents whose children have similar conditions. Service providers
or professionals should encourage parents to contact MUMS directly or
better yet, get permission to give information about the families to MUMS.
An answering machine is available 24 hours a day to leave this information.
A survey form is sent to the family to get needed medical information about
the child and to ask parents if they want information about support groups
covering their child's condition, to be matched with another family.
Parents are also asked if they are willing to provide support to another
family over the phone or in the hospital. MUMS has volunteer parents who
are willing to visit parents who would otherwise be alone during a child's
surgery or hospital stay. MUMS asks parents for permission to release their
names for research and encourages those doing research to contact MUMS for a
list of parents.
In order to increase the possibility of matching very rare disorders, MUMS
networks with other parent-to-parent organizations throughout the United
States and other foreign countries. Parent and professional members of MUMS
span 45 other countries: Canada, England, New Zealand, Greece, Russia, South
Wales, Ireland, Scotland, Germany, Lebanon, Panama, Israel, Africa, Australia,
Italy, Belgium, Japan, and India. MUMS receives from and, correspondingly,
makes referrals to such groups as
NORD (National Organization for Rare
Disorders,
The Alliance of Genetic Support Groups,
American Self-Help
Clearinghouse and The Association of Birth Defect Children.
It is MUMS' hope that by matching families, parents can mutually support one
another emotionally, exchange valuable medical information they have gathered
and alleviate the feelings of being alone. MUMS refers families to existing
support groups for specific rare disorders and encourages and assists parents
in forming support groups when none exists. By helping families network with
each other many support groups for rare disorders have been established. Other
parents are excellent resources for parents of newly diagnosed children to gain
information about dealing with the day-to-day medical problems, to gain coping
skills, and to find doctors with expertise in the child's specific rare medical
condition.
List of Disorders - Updated March 28, 2007
MUMS: National Parent to Parent Network
Julie J. Gordon
150 Custer Court
Green Bay, Wisconsin 54301-1243
1-877-336-5333 (Parents only please)
920-336-5333
1-920-339-0995 (fax)
E-mail: mums@netnet.net
Web: http://www.netnet.net/mums/
Last updated May 20, 2007
mums@netnet.net