Alternating Hemiplegia community

Here's a selection of information from patients & professionals to better understand Alternating Hemiplegia .

Alternating Hemiplegia resources

Alternating Hemiplegia Frequently Asked Questions

Here are some of the most frequently asked questions and their answers:

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How is AHC diagnosed?

Many children are initially diagnosed with epilepsy or other seizure disorders and prescribed anticonvulsent medications. While some do suffer from seizures, the use of these drugs are generally un...

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Are there any current treatments for AHC?

The drug Flunarizine (trade name Sibelium) has been used successfully in many cases to lessen the effects of AHC. Other drugs that induce sleep have also been used to reduce the severity and length...

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What causes AHC and is there a cure?

The cause(s) of AHC is unknown and there is no known cure for the disorder.

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What other symptoms are associated with AHC?

Children with AHC have exhibited a wide range of symptoms in addition to AHC. These include tonic attacks (lack of muscle tone), dystonic posturing (stiffening of extremities), nystagmus and other ...

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What is Alternating Hemiplegia of Childhood (AHC)?

AHC is a rare neurological disorder in which repeated, transient attacks of hemiplegia occur, affecting one side of the body or the other, or both sides of the body. The hemiplegia (paralysis of a ...

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Alternating Hemiplegia Patient Groups

These are patient organisations that have experience and expertise in Alternating Hemiplegia . They are supporters of this website. Contact them for more information on their activities.

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  • AHC Assoc. Iceland

    The AHC association of Iceland is a non-profit organization offering support for affected patients and their families.

    Contact AHC Assoc. Iceland

  • A.I.S.EA

    A.I.S.EA Onlus raggruppa le famiglie italiane con figli colpiti da Emiplegia Alternante e amici desiderosi di contribuire alla lotta contro questa malattia. The official website, www.aisea.org The blog, http://blog.aisea.org The FB page http://www.facebook.com/aiseaonlus Email info@aiseaonlus.org Contatti: Rosaria Vavassori, Presidente c/o A.I.S.EA Onlus Via Sernovella, 37 - 23878 Verderio Superiore (LC) Tel. e Fax (39) 039.9518046 Email info@aiseaonlus.org

    Contact A.I.S.EA

  • AESHA

    La Asociación Española del Síndrome de la Hemiplejia Alternante (AESHA) es una asociación sin ánimo de lucro que opera en el territorio español, formada por distintas familias con hijos afectos por la enfermedad con el objetivo común de mejorar el conocimiento de la misma, mediante la colaboración con otras asociaciones internacionales, apoyando la investigación, favoreciendo el intercambio de las experiencias vividas entre sus miembros y asesorando en materia de aspectos sociales, educación y soporte a familiares.

    Contact AESHA

  • AHC Foundation

    Mission Statement: Our mission is to find the cause(s) of AHC, develop effective treatments and ultimately find a cure, while providing support to the families and children with AHC by funding research to accomplish these goals. Secondarily, we strive to promote proper diagnosis, educate health care professionals, the public and related organizations, encourage the worldwide exchange of information and advance the development of an international database of all AHC patients.

    Contact AHC Foundation

  • AHC Deutschland e. V.

    Wir sind ein Verein der es sich zur Aufgabe gemacht hat Menschen und vor allem Kindern, die an Alternierender Hemiplegie (AHC = Alternating Hemiplegia of Childhood) erkrankt sind zu helfen, zu fördern und zu unterstützen. Zur Zeit gehören unserem Verein 27 Familien an. Da es in Deutschland eine derzeit sehr kleine Anzahl an bekannten Patienten gibt, möchten wir alle bitten, die nicht genau wissen, ob vielleicht Ihr/e Angehöriger/e an AHC erkrankt ist, sich bei uns zu melden, bzw. mit uns in Kontakt zu treten. Wir können Ihnen sicherlich weiterhelfen, einige Fragen beantworten und evtl. erste Hilfen auf Ihrem Weg mit dieser Krankheit geben.

    Contact AHC Deutschland e. V.

  • AHC Assoc. France

    Fondée en 1992 par un groupe de parents, avec l’appui du Pr Jean AICARDI, l’AFHA (Association Française de l’Hémiplégie Alternante – loi 1901) regroupe la plupart des familles françaises ayant un enfant atteint d’AHC, ainsi que des professionnels et amis portant intérêt à cette maladie.

    Contact AHC Assoc. France

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Alternating Hemiplegia Documents

Resources, documents and detailed informations on Alternating Hemiplegia . In this section you can download brochures, ask for printed documents or find useful links.

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Alternating Hemiplegia Articles

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Study on Quality of Life of People with AHC (2011 - 2012)

The authors of the study are: Philip Franchini and Rosaria Vavassori of AISEA; Dr. Elisa de Grandis and Professor Hedwig Veneselli of the Gaslini Institute of Genoa, and Dr. Melanie Giannotta Osped...

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Orphanet: Alternating hemiplegia of childhood (June 2009)

Alternating hemiplegia of childhood (AHC) is a rare neurodevelopmental disorder characterized by recurrent episodes of hemiplegia and paroxysmal disturbances associated with persistent developmenta...

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Alternating Hemiplegia Events

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  • May 2012

  • 6th European Conference on Rare Diseases & Orphan Products (ECRD 2012)

    From 23 to 25 May 2012

    MCE Conference Centre in Brussels, Belgium

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  • June 2012

  • 13th Asian Oceanian Congress of Neurology

    From 4 to 8 June 2012

    The Asian and Oceanian Association of Neurology is pleased to be staging the next Congress at the Melbourne Convention & Exhibition Centre, Australia in June 2012. This Congress is returning to Melbourne for this first time since 1966.

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  • European Human Genetics Conference 2012

    From 23 to 26 June 2012

    Its aims are to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe. The Society will encourage and seek to integrate research and its translation into clinical benefits and professional and public education in all areas of human genetics.

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  • AHCF Families Save the Dates

    From 29 June to 1 July 2012

    Save these Dates for our Family Meeting in San Francisco, California. More details coming soon.

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  • November 2012

  • 62nd Annual Meeting of the American Society of Human Genetics (ASHG)

    From 6 to 9 November 2012

    "We have 24 invited slots available and anticipate receiving over 120 proposals. We encourage you to provide as much information as possible in order to assist the Program Committee in their decision making. The ASHG 2012 Program Committee encourages the submission of debate or panel style sessions on thought-provoking or controversial topics."

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Alternating Hemiplegia community news

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