Advocacy and Support Groups

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Androgen Insensitivity Support Group

Focus: AIS

The Androgen Insensitivity Syndrome Support Group (AISSG) is a consortium of worldwide support groups that owe their origins to the UK-based group which was started in 1988. AISSG provides information and support to young people, adults and families affected by XY-female conditions such as complete and partial Androgen Insensitivity Syndrome or AIS (old name Testicular Feminization Syndrome or Testicular Feminisation Syndrome). They also support those affected by Swyer’s Syndrome (XY Gonadal Dysgenesis), 5-alpha Reductase Deficiency, Leydig Cell Hypoplasia, Mayer-Rokitansky-Kuster-Hauser (MRKH) Syndrome, Müllerian Dysgenesis, Müllerian Duct Aplasia, Vaginal Atresia, and other related conditions. Some information is provided in multiple languages.

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Beautiful You MRKH Foundation

Focus: Mayer-Rokitansky-Kuster-Hauser Syndrome

Beautiful You MRKH Foundation is a supportive online community working to help women feel beautiful, exactly as they are. They work with healthcare professionals to move towards acceptance and understanding of MRKH.

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CARES Foundation

Focus: CAH

 CARES Foundation is a nonprofit organization committed to improving the lives of families and individuals affected by Congenital Adrenal Hyperplasia (CAH) through proactively advancing research for a better understanding of CAH, better treatments and a cure; educating the public and healthcare professionals about all forms of CAH; advocating for universal newborn screening; and providing support services and resources vital to the CAH community worldwide.

Visit: CARES Foundation

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Hypospadias & Epispadias Association

Focus: hypospadiasepispadias

Education and support for people dealing with hypospadias and epispadias.

Visit: Hypospadias & Epispadias Association

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Klinefelter Syndrome & Associates

Focus: Klinefelter Syndrome

KS&A’s mission is to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives.

Visit: Klinefelter Syndrome & Associates

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Magic Foundation

Focus: AISCAHepispadiashypospadiasKlinefelter Syndrome

Major Aspects of Growth In Children (MAGIC) is made up of 25,000 + families whose children (and affected adults) have growth hormone deficiency or other medical conditions which affect their growth. They have a subgroup called Genital and Reproductive Anomalies in Children.

Visit: Magic Foundation

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MRKH.org

Focus: Mayer-Rokitansky-Kuster-Hauser Syndrome

A support group for women with Mayer-Rokitansky-Kuster-Hauser Syndrome (also known as MRKH, Mullerian Agenesis, Vaginal Agenesis, and Congenital Absence of Vagina).

Visit: MRKH.org

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Turner Syndrome Society of the US

Focus: Turner Syndrome

The members of this society have offered a wealth of support for over 20 years. They understand that every person’s needs are unique as Turner syndrome affects each girl and woman in a different way. Education is their foremost goal whether a member of our society or a guest, all educational and medical information is accessible for free. The most popular items are the Turner Syndrome Clinical Guidelines, National Conference, Volunteer Support (parents and adult women that “have been where you are”), and Local Chapter and Support Group information.

Visit: Turner Syndrome Society of the US

 


InterACT

Focus: Intersex, DSD

InterACT is a legal advocacy network working to support children and adults born with intersex traits through legal avenues or other means. “InterACT believes that the law, properly used, is a tool for achieving justice; and that justice, properly understood, has compassion at its heart.” They also believe that improving communication is the cornerstone for improving care for children born with intersex traits.

Visit: InterACT

 


dsdfamilies

Focus: DSD

dsdfamilies is an online information and support resource for families with children, teens and young adults who have a DSD. The site brings together user-friendly information on the medical management and decision-making in DSD, with psychological support, and sensitive and practical peer support. They chose the name ‘dsdfamilies’ because they want to focus on care for the whole family, rather than just for the individual affected by DSD.

Visit: dsdfamilies

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