Health - Support Groups - Conditions and Diseases

Health - Support Groups - Conditions and Diseases

Online Genetic Syndrome Support Groups - Sites are listed alphabetically by disease/condition.
Alliance of Genetic Support Groups - Nnational coalition of consumers, professionals, and genetic support groups to voice the common concerns of children, adults, and families living with, and at risk for, genetic conditions.
Peter's Anomaly Support Group - An online support group for people dealing with Peter's Anomaly.
Chromosome Deletion Outreach, Inc. (CDO) - Non-profit voluntary support group for families affected by rare chromosome disorders.
Blue Cone Monochromacy - A discussion board for those affected by BCM. Read the contents, search and post from this location.
Chromosome 22 Central - Support group for families who have children with any chromosome 22 disorder, including trisomies, cat eye syndrome, translocations, deletions 22q11, 22q13, VCFS, Digeorge syndrome, rings and unique malformations.
S.O.F.T. - A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
Unique Rare Chromosome Disorder Support Group - Support and information for families of children with rare disorders.
S.O.F.T. - Support Organization in the United States for Trisomy 18, 13, and other related disorders. Provides literature, conferences, newsletter, chapter information, and international contacts.
Cornelia de Lange Syndrome (CdLS) Foundation Outreach - Family support organization which exists to ensure the early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime.
Chromosome 18 Issues - A support and awareness discussion board for people affected by this disorder.
Nobellybutton - For adult survivors of gastroschisis, omphaloceles, or other abdominal wall defects.
Friedreichs's Ataxia Network - Support group providing some answers and up to date information on local support and worldwide research being conducted. Based in Brisbane.
Trisomy 13 Support Board - A message board for people who have children or who have lost children to a trisomy disorder.
Ideas - A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15).
Sleep Disorders Message Board - Forum on the various sleep disorders.
SleepNet Support Groups - A guide to patient support groups.
SleepDisorders.com - Meet people with similar conditions through the forums. Join focus groups to help find cures. Find seminars, conferences, and other event listings.
A.W.A.K.E. in Philly Sleep Disorders Support Group - Meeting information is posted on the site, as well as other general information that is useful to apnea sufferers.
Open Forum - Providing an improved way of communicating and exchanging ideas for anyone concerned about the issues of sleep research and sleep disorders.
Sarasota-Manatee RLS Support Group - Florida group for patients with Restless Legs Syndrome and PLMD, including links to information for patients, physicians and other medical professionals, and local meeting information.
Late Sleepers Bill of Rights - A not-too-early wake up call to recognize and respect the rights of night owls everywhere.
Narcolepsy Message Board and Help Forum - A place for narcoleptics to get it off their chest or to ask/answer questions or to just commiserate.
Skin, Hair, and Nail Problems Message Board - A large forum on these issues.
What To Do About Prurigo Nodularis - A support site for people with Prurigo Nodularis.
Acne Support Group in Cyberspace Chat Room - A support group and chat area for everyday people of all ages and walks of life with acne to visit, discuss, share treatments, support each other, and move through the stressful event of having acne.
International Chronic Urticaria Society - Supports those dealing with Chronic Urticaria (hives lasting longer than 6 weeks). Current medical findings, surveys, research notices, email chats and support group.
Diagnosis: Pityriasis Lichenoides et Varioliformis Acuta (PLEVA) - Support group for those with Pityriasis Lichenoides et Variolformis Acuta (PLEVA)lesions and rashes, including pictures and message board.
Skin Disorders Community - Message boards and chat dedicated to sharing information, offering support, and coping strategies to better cope with skin disordres. Community moderated by volunteers.
Ichthyosis Registry - NIH-supported Registry promoting research into diagnosis and treatment of ichthyoses and related disorders. Serum testing for X-Linked ichthyosis, biopsy slide analysis, and DNA testing for many types of ichthyosis available for enrolled individuals.
Scabies Message Board - Message board and support group for those with scabies and other skin disorders.
Elliot's Disease Research Library - Library of information for those suffering from Elliot's Disease, an undiagnosed parasitic skin disorder affecting humans and/or their pets that may mimic lice or scabies.
National Unidentified Skin Parasite Association - Support group for those suffering from an unknown skin condition related to parasites.
The Morgellons Foundation - Non-profit support group for those with Morgellon's skin disorder.
The Comfort Zone - Support group for those with this unknown skin condition which involves itching, lesions, granules, glitter, and fibers in the skin
Reporting Registry - "Not Lice" Report - Registry for "mystery illness" that involves black specks, fibers, granules and a variety of other symptoms.
Skin Cell - An international non-profit discussion forum for skin complaints including psoriasis, eczema, acne, and rosacea.
Clear Skin - A support group for the discussion of the root causes of acne and how to deal with it.
Hydroa Vacciniforme - Provides information and support for persons suffering from Hydroa Vacciniforme or Hydroa Aestivale.
KeratosisPilaris.org - Offers a message board, links, images, and information concering Keratosis Pilaris, its symptoms, and treatments, as well as further information on related disorders.
Tef/Vater International - Support group and information source for families with children born with VATER, esophageal atresia and/or traceoesophageal fistula.
Pupa's Domain - Details about this UK registered charity supporting patients, families, careers and research relating to purine metabolic disorders.
Bowel Disease Board - Forum for the family members of people with crohn's disease, ulcerative colitis or other forms of inflammatory bowel disease.
Reflux In Children Support Group - A support group for parents of children suffering from reflux and other motility issues.
Parent Soup Reflux Board - This is a support board for parents of children with reflux.
Ulcerative Colitis Community - Message boards and chat dedicated to sharing information, offering support, and coping strategies to better manage Ulcerative Colitis. Moderated by volunteers.
GERD Town - Interactive online support group for people suffering from GERD (Gastro Esophageal Reflux Disease).
Dietary and Self Help for Heartburn Sufferers - An educational resource for patients suffering from heartburn and GERD complications.
National Heartburn Alliance - A thorough overview of information on heartburn and related conditions, including treatment options.
Our Gerd Kids - For parents and concerned others of children with reflux and other motility disorders. Includes a message board and chat.
Student Health Resources: Rutgers University - An overview of heartburn and related issues and conditions, written for the college-age audience.
Heartburn Helpline--GERD Awareness - Facts about GERD and why it could be the cause of frequent heartburn
Infant Gastric Reflux Stories - Information to help in parenting these babies/children, including information that doctors don't advise you about. Links to other useful sites. This information was designed for the New Zealand parent, but may be useful to others as well.
GERDKids2 Reflux Support Group - A support group for parents of children who have GERD (reflux) and other motility disorders.
Heartburn - Information and Treatment - Chinese medicine information and treatment of heartburn, the name given to indigestion which causes a burning sensation in the stomach and/or chest. Discussion area and treatment sales.
Guardian Society - Support group for parents that have kids with Hirschsprungs disease.
American Pseudo-obstruction and Hirschsprung's Disease Society - APHS promotes public awareness of conditions that significantly affect gastrointestinal motility.
Multiple Endocrine Neoplasia Forum - A supportive place to discuss and learn about diagnosis, treatment and living with this disorder.
People's Burn Foundation - Comprehensive resources for survivors and their loved-ones. For children, Brave Hearts' Camp, for adults, skin care and for families, prevention.
Burn Survivors Online - Peer support website for burn victims and burn survivors.
Texas Burn Survivors - Details about the TBSS who is committed to burn support and rehabilitation through group support meetings, a summer camp for children, professional rehabilitation, counseling, financial, prosthetic, and burn informational support.
Burn Support Groups Database - An International multilingual database web site. Search performed by the initial that represents your country.
Cancer Message Board - Non-monitored message board.
Vital Options - TeleSupport Cancer Networt.Innovative radio talk show, The Group Room. The Group Room uses communications technology to reach every person dealing with cancer.
Why Me, Inc. - A non-profit charitable organization that provides essential emotional and financial support for children living with cancer and their families who reside in the Central Massachusetts and Northern Connecticut regions.
Association of Cancer Online Resources - Offering 70 online cancer information and support electronic groups.
Cancer Support Groups - Dedicated to bringing patients and their families the latest information on cancer diagnosis and treatment. From cancernews.com.
Miracles Unlimited - A post-cancer seminar and retreat for patients and their spouses or special support people.
Cancer Resource Index. - Information and links for many types of cancer and treatments. Also over 50 support groups and specialized chat rooms.
First City Council on Cancer - An introduction to Ketchikan, Alaska's Council on Cancer with on-line application for assistance.
Shared Experience Cancer Support - Shared Experience is a collection of first hand accounts by cancer patients and the people who love and care for them, gathered together in a freely searchable listing, by cancer type, treatment, medication.
Life an Career Clinic - Discover, passion, meaning, and life fulfillment with cancer survivor Mary Lyn Miller's programs of clarity, focus, direction and support.
Cancer Support Resource Page - A physician directed website for cancer patients, their families, and caregivers. Your starting point for cancer information on the web.
National Coalition for Cancer Survivorship - A nationwide network of independent organizations and individuals working in the area of cancer support and information.
CancerShock - With bulletin boards and media (video and flash animations) that gives people a space to create shocks of change in the culture of cancer.
Cancer View - Maintained by people affected with cancer. Support, chat and forums.
Conquer Cancer - Provides free doctors, nurses and individuals with a place to chat, use a message board, interact with other families, friends, health care professionals, and patients.
Intramedullary Spinal Cord Tumor Support Group - Link to e-groups meeting place for people diagnosed or treated with intramedullary spinal cord tumors.
PMP Pals - Pseudomyxoma Peritonei Network - A worldwide resource and referral service for patients with rare intestinal cancers and/or Pseudomyxoma Peritonei.
Healthy Young Attitude - Details about this network of young adults whose lives have been affected by cancer. Includes support, a bulletin board, stories, resources, pictures and details on how to join the cause.
Child of a Parent with Cancer - Support and meeting place for kids, teens and all aged children of parents with cancer incorporating guest book, boards and chat room.
Hodgkin's United Group - Lymphoma Support - Hodgkin's United Group. Information, advice, survivors stories for people with Hodgkin's Disease (HD) and Non Hodgkin's Lymphoma (NHL) and their carers..
Cancer Survivors Gathering Place - Spoken by those who understand cancer.
Cancer and Careers: Living and Working with Cancer - An interactive resource and community for working women with any type of cancer and their employers, coworkers, and caregivers.
The Danish Cancer Society - Fight cancer and its consequences, through research, preventive measures and support for patients and their families.
Cancer Patients Aid Association - An NGO working for the welfare of cancer patients in India. Activities include detection, insurance, rehabilitation and awareness.
OncoChat - Global support community for people whose lives have been touched by cancer.
Cancer Survivors On Line - Free information, resources, and support to all cancer patients, their families, friends, and the professionals who treat them.
International Union Against Cancer - Its objectives are to advance scientific and medical knowledge in research, diagnosis, treatment, and prevention of cancer, and to promote all other aspects of the campaign against cancer throughout the world.
Bay Area Tumor Institute: Support Groups - A list of East Bay Cancer Support Groups from the Bay Area Tumor Institute's Cancer Patient Guide.
The Meningioma Society Mailing List - For meningioma patient support, meningioma patient information, and meningioma patient treatment options, join the Meningioma Society Mailing List.
Humberside Oesophageal Support Group - Oesophageal/Esophageal Cancer information and patients' tips. Links to other useful sites and online support groups for oesophageal cancer. Also useful for people with Barrett's Oesophagus or GORD.
Chemotherapy and You: A Guide to Self-Help During Cancer - A booklet for patients who are receiving chemotherapy for cancer
Acoustic Neuroma Mailing List - Join the list, unsubscribe and select your options as to how you would like to participate.
SarcomaSurvivors - Support group for people dealing with sarcoma cancer. General information, message boards, chat.
Living With Cancer - Geared towards those who have cancer and need someone to talk to. Contains information and motivational support.
A Legacy of Hope Forum - A nuturing, interactive Christ centered forum for cancer patients and their loved ones; share experiences, hopes, victories, fears, receive encouragement and support from others in similar situations.
OncoLink - Psychosocial support and personal experiences: ways to cope with cancer, shared experiences of patients and survivors.
Coping with Cancer - Resources for living with mesothelioma and other types of cancer. Includes caregiver's guide and advice for dealing with pain.
Australian Cancer Self-Help Site - Medical support to facilitate exchange of information about cancer.
Breastlink.com - Your source for integrated breast cancer care. We believe that healing and recovery must come from both sides of the partnership.
Georgia Breast Cancer Coalition - Breast cancer resources for advocacy, education, and support in Georgia .
Ask NABCO Online - A monthly on-line health column from the National Alliance of Breast Cancer Organizations (NABCO) that answers commonly-asked questions about breast cancer.
Breast Cancer Mailing List:Information and Support - Information and subscription form for the Breast Cancer Mailing List
CancerNews : Breast Cancer - Information on breast cancer support groups. Cancer News, information, and books. Includes link to CancerNews Breast Cancer Support Directory.
WIN Against Breast Cancer - winabc.org - The Women's Information Network Against Breast Cancer is a non-profit organization and excellent resource for information and support for breast cancer survivors, families, and newly diagnosed patients.
AVON- Women- The Crusade - AVON's Breast Cancer Awareness Crusade
Breast Cancer Support Groups: CancerNews - Information on breast cancer support groups. This is a service of CancerNews.com.
Breast Cancer ACTION Nova Scotia (BCANS) - BCANS has a very active community of breast cancer survivors. Our web site has been providing online support for thousands of men and women whose lives have been affected by breast cancer.
Bosum Buddies Breast Cancer & Lymphedema Support Group - Contact information for a support group in Naples, FL.
Breast Cancer On-line Support - A breast cancer support group with interactive facilities including guestbooks, chat, voice chat, books, and up-to-date research news on breast cancer.
Community Breast Health Project - Organization dedicated to improving the lives of people touched by breast cancer through educational resources and community activities.
Breast Cancer Survivors Foundation - Founded to support breast cancer survivors, their families, and the professionals that support them.
The Breast CancerTalk Project - Provides support groups in the Silicon Valley/San Jose communities in California. Site has stories, letters, reading list and links to other breast cancer sites.
Breast Cancer Survivor's Discussion Board - An active discussion board for breast cancer survivor's to interact with one another for support, technical information and socializing.
Cleveland Clinic: Breast Cancer Forum - Ask disease related questions in a bulletin board format and have them answered by online doctors from the clinic.
The OBGYN.net: Breast-Health Forum - Discussion and support, including archives, posting, rules and instructions.
Las Isabelas - Providing sensitive and appropriate psychosocial support, educational resources, comfort, and guidance for Latinas with cancer.
Living Proof - Support and information for lesbians with breast cancer and/or their partners. Located in Central, Ohio.
OncoLink: Breast Cancer - Support - This document contains links to psychosocial support information for breast cancer patients.
The Breast Cancer Forum - Message board for questions and answers about all aspects of breast cancer.
Pillars of Hope - Supporting breast cancer victims and their friends/families. Free hats to chemotherapy patients, mentoring.
Breast Cancer Mailing List Archive - Searchable archive of the largest breast cancer mailing list, going back to 1995.
Friends In Touch - An online breast cancer support group for patients, survivors and care givers. Includes poetry, survivor's stories, a chat room and resources.
The Breast Cancer Forum - Interactive medical question and answer format about all aspects of this disease. Patient question is replied to by online doctors from the Cleveland Clinic. Extensive library and archive.
OnHealth - A Patient's Guide to Prevention and Treatment - For women recently diagnosed with breast cancer and wondering about the road ahead, here is a guide: personal thoughts and advice from other women who've been there.
Walks for Women, AMC Cancer Research - Help fight breast cancer. Donations fund research into control and prevention, helping women everywhere defeat breast cancer.
Lung and Respiratory Message Board - Unmonitored message board.
Cheshire Asbestos Victims Support Group - Details about this volunteer organization, providing support to those with asbestos-related diseases and cancers. Based in the United Kingdom.
Alliance for Lung Cancer Advocacy, Support, and Education - ALCASE is the only nonprofit organization dedicated solely to helping people with lung cancer improve their quality of life.
Health A to Z - Smoke Out Center
The Skin Cancer Zone - Providing resources for information about skin cancer.
Surviving Scleroderma - Many Scleroderma patients suffer from Raynaud's Phenomenon. Learn more about this condition, including how to ease discomfort! Message Boards
TC-NET - Offers email support groups devoted to helping people with any and all aspects of testicular cancer and extragonadal germ cell tumors. Details about the groups and joining instructions.
BMT Support Online - We are an online support organization for people facing or recovering from Bone Marrow Transplantation, their family members, caregivers and friends.
Bone Marrow Transplant Support Group - Information and links to resources for BMT, Leukemia, Lymphoma, Fatigue, Stem Cell. Patient Stories, Message Board, and a Glossary of Terms.
Learn about the Bone Marrow Transplantation Program at Dana-Farber Cancer Institute - Learn about bone marrow transplants and the Bone Marrow Transplantation Program at the Dana-Farber Cancer Institute. The BMT Service starts with the donor search process and includes post transplant services
The Picpain Network - Primarily for women, this support facility includes online counseling, a chat room/forum, medical database, journal, and provides links to medical information.
Our Chronic Pain Mission - As well as offering pain management information and support, this site also provides resources, a chat facility, and the ability to post messages to an online doctor.
Ed's Chronic Pain Site - Contains information and links concerning a variety of pain management issues, including opiate narcotic usage, fibromyalgia and depression.
Coping - Derbyshire Chronic Pain Support Group - Provides information on services, and details strategies for effective self help methods of pain management. Also features a newsletter, chat/message board, links, and books/tapes.
Chronic Pain Support Group - An interactive site dealing with the human aspects of chronic pain. Features news, information, a chat/message board, newsletter and bookstore.
Pain Connection - Chronic Pain Outreach Center - Provides information, newsletters, resources, education and support for chronic pain sufferers and their families.
Pain Concern - Provides information about this campaigning organization. Offers support, a forum, news, books, articles and leaflets.
Chronic Pain Support Group 2002 - Provides information about the group, details meetings and upcoming activities. Also features a newsletter and the humorous aspects of chronic pain.
Chronic Pain Advocacy League - Describes the services, aims and objectives of this Canadian organization. Offers pain facts and information about events and meetings.
Chronic Pain Support Forum - Support for those who suffer from any type of chronic pain. Information, message board, and chat room.
Chronic Pain Forum - Administered message board for pain discussion.
Whiplash Hurts - A message board where support is offered to people dealing with whiplash or related injuries.
Chronic Pain Forum E-Mail List - A forum and e-mail list for chronic pain sufferers and professionals to exchange information.
Living with Daily Pain - Message boards for those who live with daily pain and those who care for them.
Chronic Pain Community - Moderated message boards and chat.
Chronic Pain Message Board - A message board forum for chronic pain sufferers.
Why Me, Marie - A young person's chronic pain site, which offers personal experiences, information and a chat facility.
Yahoo! Groups : Safe Haven CPS - A peer-group support resource for adults
Yahoo! Groups - Support for Chronic Pain - A peer-group support resource for adults.
Help Living With Chronic Pain - Message board facility and information on chronic pain conditions.
Arachnoiditis Coalition - An e-mail based support facility for Arachnoiditis and other chronic neck/back conditions.
MediBoard Network - Chronic Pain and Pain Management - Dedicated to interaction between sufferers of chronic pain through a health minded bulletin board.
RSD Victims Support Group - Online support group for patients and families dealing with reflex sympathetic dystrophy. Provides information, links, news and personal experiences from sufferers.
Friends International CFS/FMS/ME Chronic Pain Support - Online support group for chronic pain conditions.
Gulf War Syndrome Message Board - Healthboards.Com message boards on health related topics, this board dedicated to discussion on Gulf War Syndrome.
The Personal Side of Craniofacial Differences - Personal accounts of living with craniofacial conditions, and related webrings.
Acne Support Group - Information and support on acne, including top ten tips, beauty tips and problems.
Disfigurement Guidance Centre - Support and information for people with facial and other disfigurements via post or telephone. Details of International Skin Laser Directory and booklets. Based in Scotland.
FACES: The National Craniofacial Association - Support and resources concerning craniofacial disorders including information on 28 specific craniofacial disorders. Financial assistance for secondary costs. USA based organization.
Crouzon Support Network - A network designed to offer support to individuals and families dealing with Crouzon's Syndrome and other craniofacial anomalies.
Moebius Syndrome - Moebius Syndrome support, information and resource site.
The Journey to Sara's Smile - Canadian surgeon Dr Ronald Zuker performed nerve graft surgery to remedy Sara's left-sided facial paralysis.
Face the Future - Information and resources for people living with a facial disfigurement in the North East of England.
Sincere Meditations - Born with a severe facial disfigurement, David Roche has turned his "flaw" into a source of strength and he brings this to his audiences.
AboutFace - International organization providing information and emotional support to individuals and their families affected by facial differences and disfigurements.
Changing Faces - UK-based charity giving support and information to people with facial disfigurement and other facial differences and their families, and the professionals who work with them.
Support Works Online - Resources to find or form support groups related to facial difference. Information on medical research.
The Craniofacial Foundation of Arizona - Provides information and support for people with head and face disfigurement. Happy Faces Family Network is a non-medical organization of volunteers, aiming to raise public awareness of craniofacial problems, promoting community acceptance and understanding.
University of Florida Craniofacial Center - Serves patients with craniofacial malformations and their families, conducting research, and educating students and professionals in the discipline of craniofacial science and related healthcare.
The Craniofacial Society of Great Britain and Ireland - Information about the society, which is a multidisciplinary forum for specialists.
The DRM WebWatcher: Facial Differences - A Disability Resources monthly guide to online resources about craniofacial differences.
Let's Face It UK - Friendship and support for people who have a facial difference.
Birthmark Support Group - From the UK-based group, giving information about birthmarks, the process of getting help, treatment centres, newsletters, diaries of events and links to other associated support groups.
The New Face Foundation - A non-profit corporation that treats children born with facial and craniofacial deformities such as cleft lip and cleft palate.
Cancer Of The Eye Linkline (CELL) - UK-based helpline for people whose lives are affected by loss of an eye through cancer or trauma. Support, information and links.
XP Support Group - UK-based organisation giving support, help and information to those affected by xeroderma pigmentosum and other photosensitive conditions.
Children's Craniofacial Association - Dedicated to improving the quality of life for facially disfigured children and their families; addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.
Let's Face It USA - A nonprofit network for people with facial difference, their families, friends and professionals. Links professionals, patients, parents and communities to each other and to networks, books and articles.
John Hopkins Center for Craniofacial Development and Disorders - Provides information on research, education and clinical care for researchers and physicians. An educational interactive resource for families. Details activies at the Center.
Beneath the Surface - Created for all individuals of facial difference who are looking for support, resources, and a forum to share their stories and read about others.
Langer-Giedion Syndrome Association - International network of families and professionals providing information and support to people affected by Langer-Giedion Syndrome.
Langer-Giedion Syndrome - The University of Houston Langer Giedion Syndrome home page. Information and resources for professionals and families.
Teeter's Page - Teeter's story, and Teeter's Internet friends.
What is Apert Syndrome? - Medical information including definition, major and related features of the condition, genetics.
TJ's Journal - About Apert Syndrome and how it has affected the life of a baby boy named TJ and his family.
Swedish Apert Syndrome Information - General information about Apert syndrome with photographs of people with the condition. English version follows Swedish text.
Krista's Page - Written by her father, this contains biographical detail about living with Apert syndrome.
Apert Syndrome - Produced by Alliance of Genetic Support, this includes comprehensive information about the condition, an Apert listserve, newsgroup, links, webring and family homepages.
Apert Syndrome - Resource for contacts, chat rooms, pen pals and other relevant links.
Andrew's Journey with Apert's - Written by father of child with Apert syndrome. Contains biographical detail, and links to Apert syndrome stories and support sites.
Apert Syndrome - Frequently asked questions and answers on Apert syndrome.
Asher's CS - An individual's struggle with CS, contains information and links.
Craniosupport - Support, information, and research tools to parents of children with craniosynostosis.
Craniosynostosis and Parents' Support - Site dedicated to giving families dealing with craniosynostosis support and information.
Parents of Children with Craniosynostosis (PCC) - A site offering information and support about craniosynostosis. For families in Eastern Idaho and parts of Utah.
The Romberg's Connection - International support group for families whose lives are affected by Romberg's syndrome.
Romberg's Syndrome - General information, contacts, on-line discussion groups and links.
Parry Romberg Syndrome - Stories from people affected by Parry Romberg syndrome, support and information.
Parry Romberg Syndrome Information Page - Information compiled by the National Institute of Neurological Disorders and Stroke (NINDS). Definition, treatment, prognosis, research and details of relevant organizations.
Sagittal Synostosis Homepage - Information (including details of genetic research) and support for people affected by this condition.
Craniosynostosis - Definition, description, diagnosis, treatment and support. Pictures included.
Questions and Answers - Craniosyntosis - Frequently asked questions about craniosyntosis, patient and physician resources, and news.
Stickler Involved People - Medical information, networking, news and updates.
Dave Hawley's Stickler Syndrome Page - Indexes on-line information related to Stickler's Syndrome.
Stickler Syndrome Support Group - Information and support for people affected by Stickler Syndrome. UK-based, but with international links.
The Treacher Collins Network - Support for families affected by this condition.
Microtia - Congenital Ear Institute - Information on microtia for families and health care providers. Spanish version as alternative.
Treacher Collins Syndrome - A Personal View - Information, personal insight, discussion forum and the exclusive "TCS Around the World" feature.
The Treacher Collins Family Support Group - Uk-based website, with versions in English, French, German and Spanish. Information regarding the syndrome, genetics. hearing aids, links and support groups.
Treacher Collins Connection - Building a community of people with Treacher Collins syndrome and their families in an environment that transforms people through face to face sharing of experiences, heartaches, and love.
Maryland Society for Cleft Lip and Palate Children - For children with cleft lip/cleft palate and their families and friends.
Final Operations (Cleft Lip/Palate) -- John B. Mulliken - John B. Mulliken, M.D. discusses final operations related to teeth, lip scars and nose, for teenagers with cleft lip/palate.
Cleft Lip and Palate Association of Ireland - An Irish voluntary group providing support and information for parents of children with cleft lip and palate and those directly affected.
Wide Smiles - Cleft Lip and Cleft Palate Resource.
Smiles - Cleft lip and palate support group providing help on craniofacial issues and an overview of cleft palae management
Cleft Lip and Palate - Concise factsheet on causes, symptoms and treatment of cleft lip and palate.
Cleft Lip Repair - A complete cleft repair procedure and illustrations, as authored and performed by Dr. John M. Lore.
Cleft Notes - Site dedicated to families with cleft born children. Pictures of bilateral cleft and submucous palate repair progression along with medical and personal information.
Living With Cleft Lip and Palate - One woman's journey to adulthood with cleft lip and palate. Contains support and information links as well as a forum for discussion with others who are faced with clefts.
Cleft Palate Unit (Guys & St Thomas Hospital, London, England) - Outlines work undertaken at the unit, advice for parents and relevant links.
American Cleft Palate/Craniofacial Association (ACPA)/Cleft Palate Foundation - Information and support from this newly combined organization.
Velopharyngeal Insufficiency - When speech therapy just isn't enough, many times pharyngeal flap surgery is recommended. This article addresses the indications and remedies for velopharyngeal insufficiency in cleft-affected patients.
The Craniofacial Surgery Book - Understanding the state-of-the-art surgical techniques to repair cleft lip and palate.
Feeding of the Newborn with Cleft Lip and Palate - Adresses feeding difficulties and solutions for cleft-affected newborns.
Transforming Faces Worldwide - A charity supporting cleft lip and palate management around the world.
Cleft-Chat and Smile - An on-line support group for parents of children born with cleft lip and/or cleft palate.
The Great Ormond Street Branch of the Cleft Lip And Palate Association - This site provides information on the committee members, fundraising events and achievements of the Great Ormond Street Branch of the CLAPA.
Speech and Cleft Lip/Cleft Palate - Find out more about the speech therapy for a child with cleft lip and/or cleft palate.
Prescription Parents - Articles and links for parents of children born with cleft lip/cleft palate.
Surgical Techniques - Several techniques explained, including the Furlow Palatoplasty (otherwise known as Z-plasty) and Pharyngeal Flap (p-flap). Includes extensive library of photographs and diagrams.
Born to be Cleft - Personal story of what it was like having been born with a cleft lip and cleft palate.
Cleft Club - Support for Cleft Lip and Cleft Palate - Cleft lip and palate support group for people born with cleft lip/palate, parents of cleft children, and other relatives and friends. Includes message boards, mailing lists, pictures, and live chat.
Cleft Lip and Cleft Palate - Check out our kids' article about cleft lip and cleft palate to learn about what causes them, the kinds of things doctors do to fix them, and what life is like for kids with cleft lip or cleft palate.
Family-To-Family Connection - Interactive group answers questions and concerns regarding cleft lip/palate care and surgery.
Left Clip Club for Older Children and Teenagers - A place for older children and teenagers affected by cleft lip and/or cleft palate to communicate and share ideas. Organised by the Cleft Lip and Palate Association (UK).
Cleft Lip & Palate Association - Information on services and advice offered by this UK association
Childrens Hospital Los Angeles, Division of Plastic Surgery - Meet the children's cleft lip & palate reconstructive team at Childrens Hospital of Los Angeles.
CleftPALS QLD INC. - Australian support group that provides information and help for families with a cleft child.
Renaissance Plastic Surgery- Cleft Lip Surgery, Cleft Lip Reconstruction, Cleft Lip Surgeon, Indiana - Dr. Fata of Renaissance Plastic Surgery specializes in cleft lip surgery and is dedicated to providing the most advanced plastic surgery techniques available for cleft lip surgery in a warm but professional environment.
Operation Rainbow - Registered Canadian charity oversees volunteer medical teams providing free reconstructive surgery to children in under-served countries with cleft lip, palate, and burn scars
CleftSupport.com - Support group for parents of children born with cleft lip and palate.
NU - Cleft Lip and Palate Institute - Information about Chicago's Northwestern University team of medical, dental, and speech professionals, helping with the various issues of cleft lip, cleft palate, and other orofacial anomalies.
Cleft Lip/Cleft Palate MEETUP Day - Informally meet with others locally on a monthly basis about cleft lip/palate issues.
Cleft Advocate - The one-stop website for cleft lip and palate resources! Providing education, inspiration, support and understanding for parents and families. Cleft Advocate also offers insurance and advocacy information and the interactive support network, the Family-To-Family Connection.
Cleft Lip and Palate - Read about this birth defect, learn why it happens, and find out how it can be prevented.
Charleston Clefts, Inc. - Charleston Clefts, Inc. is made up of people that have personal experience with cleft lip and palate either as an individual, parent, or practitioner.
Circle of Friends - Hemifacial Spasm Support Group - Online medical resources and information, mailing list, bulletin board, and chat room.
Facial Neuralgia Resources - Resources on trigeminal neuralgia, atypical face pain, anesthesia dolorosa and other cranial neuralgias. Information on symptoms, treatments, coping strategies, medical bibliography, and personal stories.
Trigeminal Neuralgia Association - Help for Trigeminal Neuralgia patients, families, and professional care givers.
Trigeminal Neuralgia Support Group - Resources and links.
The Neuralgia List - Details about this group that aims to provide a useful source of information and support for anyone with or wanting to learn more. Includes joining instructions.

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