About Our Program |
Conditions and Illnesses |
Our Physicians |
Patient Education Materials |
Support Groups and Resources
UT Southwestern Medical Center has a caring staff of medical professionals who are committed to enhancing patients’ quality of life, as well as meeting the needs of patients’ families. We can direct patients to a variety of informative and enriching support groups and other resources, which can be tailored to meet their specific needs.
At UT Southwestern, excellence in patient care includes helping point the way to resources patients may not be familiar with, but which have proved invaluable to others. We trust these services will assist patients as they move forward on the road to healing and improved health.
American Hemochromatosis Society, Inc. (AHS)
The mission of AHS is to educate and support the victims of HFE-associated hereditary hemochromatosis (genetic iron overload) and their families as well as to educate the medical community on the latest research on hereditary hemochromatosis.
American Porphyria Foundation (APF)
APF is dedicated to improving the health and well-being of individuals and families affected by porphyria through public awareness, educational programs and research support.
American Social Health Association (ASHA)
ASHA is dedicated to improving the health of individuals, families and communities, with a focus on preventing sexually transmitted diseases and their harmful consequences.
Ataxia-Telangiectasia Children's Project
The A-T Children's Project raises funds to support and coordinate biomedical research projects, scientific conferences and a clinical center aimed at finding a cure for ataxia-telangiectasia, a lethal genetic disease that attacks children.
Centers for Disease Control and Prevention-Varicella National Immunization Program The National Immunization Program is a disease-prevention program that provides leadership for the planning, coordination and conduct of immunization activities nationwide. This page provides information about chickenpox for patients and their families.
Cornelia de Lange Syndrome Foundation, Inc.
The foundation provides a host of services that attract, educate and unite families touched by this rare birth disorder, which causes individuals to develop at a slower rate, both physically and mentally.
Dysautonomia Foundation, Inc.
The Dysautonomia Foundation supports medical research and treatment for people with familial dysautonomia, a progressive disease causing dysfunction of the autonomic and sensory nervous systems.
Dystrophic Epidermolysis Bullosa Research Association of America (DebRA of America, Inc.)
DebRA is dedicated to both promoting research to find new treatments and a cure for epidermolysis bullosa and providing information and support for people with EB and their families. EB is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor friction or trauma.
Ehlers-Danlos National Foundation
The Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos syndrome by distributing accurate information, providing a network of support, and fostering and funding research.
Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST)
FIRST offers information, education and support services to persons with ichthyosis and their families. The ichthyoses are a family of genetic skin diseases characterized by dry, thickened, scaling skin.
Genetic Alliance
Genetic Alliance increases the capacity of genetic advocacy organizations to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.
Gluten Intolerance Group (Dermatitis Herpetiformis)
The mission of the Gluten Intolerance Group is to provide support to persons with gluten intolerances, including celiac disease, dermatitis herpetiformis and other gluten sensitivities, in order to live healthy lives.
Herpes Resource Center (HRC) - American Social Health Association
HRC focuses on increasing education, public awareness and support to anyone concerned about herpes.
Histiocytosis Association of America, Inc.
The Histiocytosis Association of America is dedicated to helping those dealing with the effects of rare histiocytic disorders by providing educational programs and emotional support services and supporting research.
HPV Support Program - American Social Health Association
The National HPV and Cervical Cancer Prevention Resource Center was created to address the lack of nationally available HPV and cervical cancer prevention information and resources. It is dedicated to addressing the multiple issues and challenges associated with HPV and cervical cancer prevention.
Inconitentia Pigmenti International Foundation (IPIF)
IPIF’s mission is to support research and provide family support and education on Inconitentia Pigmenti, a genetic disease of the skin, hair, teeth and central nervous system.
International Pemphigus and Pemphigoid Foundation
This group is dedicated to providing information and support to people living with the rare autoimmune skin diseases pemphigus and pemphigoid, including their family members, friends and the medical professionals who care for them.
Klippel-Trenaunay Syndrome Support Group
The Klippel-Trenaunay Syndrome Support Group was founded in 1986 and provides information and support to patients and their families affected by this rare congenital malformation.
Leprosy - World Health Organization
This WHO site discusses leprosy today, including the global situation, multi-drug therapy, monitoring and evaluation.
Muscular Dystrophy Association (MDA)
MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and community services, and professional and public health education.
The Myositis Association of America
The Myositis Association’s mission is to find a cure for inflammatory and other related myopathies while serving those affected by these diseases.
The Mastocytosis Society, Inc.
The Mastocytosis Society is dedicated to helping patients, caregivers and medical personnel understand mast cell disorders and the impact they have on patients’ lives.
National Alopecia Areata Foundation (NAAF)
NAAF’s mission is to support research to find a cure or acceptable treatment for alopecia areata, to support those with the disease, and to educate the public about alopecia areata.
National Association for Pseudoxanthoma Elasticum, Inc. (NAPE)
NAPE is an organization committed to support for people who have pseudoxanthoma elasticum (PXE), an inherited disorder that affects the skin, the retina of the eyes and the cardiovascular system.
National Ataxia Foundation
The National Ataxia Foundation is dedicated to improving the lives of persons affected by ataxia through support, education and research.
National Eczema Association
The National Eczema Association improves the health and quality of life for individuals with eczema (a disease that causes itchy, inflamed skin) through research, support and education.
National Epidermolysis Bullosa Registry Clinical Coordinating Center
This site describes the National Epidermolysis Bullosa Registry which was created as a mechanism to more rigorously study the many different forms of inherited EB, to determine the risks of specific clinical outcomes within different EB types, and to promote additional research of this disease worldwide.
National Foundation for Ectodermal Dysplasia (NFED)
NFED supports research and provides services and information to those affected by the ectodermal dysplasia syndromes, a group of about 150 heritable disorders that affect the ectoderm, the outer layer of tissue in a developing baby.
National Marfan Foundation
The National Marfan Foundation is dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders through education, support services and research.
National Neurofibromatosis Foundation
This group is dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses, a set of genetic disorders that cause tumors to grow along various types of nerves and can affect the development of non-nervous tissues such as bones and skin.
National Organization for Rare Disorders (NORD)
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research, and service.
National Pediculosis Association
The National Pediculosis Association (NPA) is the only nonprofit agency dedicated to protecting children from the misuse and abuse of potentially harmful lice and scabies pesticidal treatments. The NPA works to encourage our nation's health and child care professionals to adopt standardized head lice management programs in an effort to keep the children in school lice and nit free.
National Psoriasis Foundation
The National Psoriasis Foundation is the world's largest nonprofit organization dedicated to educating, serving and empowering people with psoriasis and psoriatic arthritis.
National Registry for Ichthyosis and Related Disorders
The national registry was created with NIH support to encourage research into the diagnosis and treatment of the ichthyoses and related disorders. People who are affected by these conditions enroll in the registry, and information about ongoing research projects is shared with those who ask to be notified.
National Rosacea Society
The National Rosacea Society’s mission is to improve the lives of people with rosacea by raising awareness, providing public health information and supporting medical research on this widespread but little-known disorder.
National Sarcoidosis Resource Center
The National Sarcoidosis Resource Center was formed to heighten public awareness and to educate people about this disease, which is often chronic and disabling.
National Vitiligo Foundation, Inc.
The National Vitiligo Foundation’s mission is to educate and help the world to understand and accept people with vitiligo while also helping the medical professions find a cure.
Nevus Outreach, Inc.
Nevus Outreach is dedicated to improving awareness, finding a cure and providing support for people affected by congenital pigmented nevi – anomalies of the skin, including moles and various types of birthmarks.
PXE International, Inc.
PXE International’s mission is to initiate, fund and conduct research, provide support for individuals and families affected by pseudoxanthoma elasticum, and provide resources for health-care professionals.
Sjögren's Syndrome Foundation, Inc. (SSF)
SSF provides patients with practical information and coping strategies that minimize the effects of the autoimmune disease Sjögren's syndrome. The foundation is the clearinghouse for medical information and the recognized national advocate for this disease.
The Sturge-Weber Foundation
The Sturge-Weber Foundation is the comprehensive education, referral and research resource for all individuals interested in birthmarks, Sturge-Weber and Klippel-Trenaunay.
Tuberous Sclerosis Alliance
The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected through family and patient support, education, and research.
United Ostomy Associations of America (UOAA)
UOAA is an association of affiliated support groups dedicated to improve the quality of life of people who have an intestinal or urinary diversion, through information, advocacy and service.
The Vascular Birthmarks Foundation
The Vascular Birthmarks Foundation networks families affected by a vascular birthmark, tumor or syndrome to the appropriate medical professionals for evaluation and treatment; provides information resources; and sponsors physician education, research and programs that promote acceptance for living with a birthmark.
Xeroderma Pigmentosum Society
The Xeroderma Pigmentosum Society is dedicated to helping XP patients and their families and educating the public about this rare genetic disease.
