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Here's a selection of information from patients & professionals to better understand Atypical Hemolytic Uremic Syn..

Atypical Hemolytic Uremic Syn. resources

Atypical Hemolytic Uremic Syn. Frequently Asked Questions

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

If you are a patient or carer with a question about living with aHUS, about treatments, or other relevant information please email your question to faq@rareconnect.org and we will put it to the specialists who have agreed to answer your questions from time to time.

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When should one consider testing for aHUS?

Atypical HUS is considered genetic when two or more members of the same family are affected by the disease at least six months apart and exposure to a common triggering infectious agent has been ex...

Tags: Genetics

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What happens to the body during an aHUS attack?

With aHUS the red blood cells break apart and these cell fragments travel to the kidneys, making tiny microscopic clots causing severe anemia and kidney failure. When the kidneys fail to work, the ...

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What is aHUS?

Atypical Hemolytic-uremic syndrome (aHUS) is a syndrome characterized by three major problem areas:

1) progressive renal failure

2) problems associated with red blood cell and platelet counts...

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Atypical Hemolytic Uremic Syn. Patient Groups

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

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Foun. Children with aHUS

The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome. Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
Contact Foun. Children with aHUS
AIRG

Association for Information and Research on Genetic Renal Diseases The AIRG organization is present in France, Spain, Switzerland, and Belgium. AIRG aims to bring together patients and their families who suffer from genetic kidney disease. Together we are stronger.
Contact AIRG
SHUA Spain

Asociación Síndrome Hemolítico Urémico Atípico en España … que es ASHUA en España: Nuestra asociación nace en base a la necesidad e inquietud de conocer más sobre esta enfermedad, así como el conocer la relación de este síndrome con otras enfermedades raras. El objetivo de la asociación es simplemente el estar en contacto con los profesionales de la investigación, doctores con pacientes que sufran este síndrome o bien estén en riesgo, así como con otros profesionales que puedan aportar información y esperanza a cualquier enfermo. La urgencia en el diagnostico del síndrome, la eficacia de las ultimas terapias desarrolladas, así como conocer cual será el futuro y evolución de los trasplantes, son las bases de nuestra inquietud, y por tanto, nuestra voluntad de divulgar de forma correcta a cualquier familia que la pueda necesitar. Agradecemos la atención y comprensión que tantos profesionales por todo el mundo (España, Italia, Francia, Alemania, Austria, Reino Unido, Noruega, Canadá y USA) nos han prestado durante más de 4 años, donde el futuro aun no tenia fecha, y que gracias al gran esfuerzo de todos estos equipos, el futuro ya es presente, y está lleno de luz y esperanza. Email: ashua.spain@gmail.com Facebook: Ahus España Ashua Teléfono: (+34) 667 766 179
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aHUSUK

aHUSUK is a non-incorporated charitable association run entirely by volunteers. Its trustees are either diagnosed with aHUS themselves or are closely related to someone who is. AHUSUK’s formal objects are to: help and support persons affected by aHUS, as well as their families and caregivers; advance the understanding and awareness of the public and the medical profession on the causes and treatment of aHUS; support the campaign for the drug Eculizumab to be made available for all patients in UK who need it.
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Atypical Hemolytic Uremic Syn. Documents

Resources, documents and detailed informations on Atypical Hemolytic Uremic Syn.. In this section you can download brochures, ask for printed documents or find useful links.

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Eculizumab safely reverses neurologic impairment and eliminates need for dialysis in severe atypical hemolytic uremic syndrome

Abstract: This case report describes how eculizumab reversed neurologic impairment and improved renal damage in severe atypical hemolytic uremic syndrome. A 50-year-old female, after presenting with diarrhea and abdominal pain, developed pancolitis, acute renal failure, and thrombocytopenia. The patient underwent total abdominal colectomy. Pathology confirmed ischemic colitis with scattered mesenteric microthrombi. Due to mental and respiratory decline, she remained intubated. Continuous venovenous hemodialysis was initiated. Renal failure, neurologic changes, hemolysis, thrombotic microangiopathy, and low complement levels all suggested atypical hemolytic uremic syndrome. Eculizumab 900 mg was administered intravenously on hospital day 6 and continued weekly for four doses followed by maintenance therapy. She recovered neurologically and renally after the third dose, and hematologically by the sixth dose. Her recovery has been sustained on long-term eculizumab treatment. In severe atypical hemolytic uremic syndrome, eculizumab safely reverses neurologic impairment and eliminates the need for dialysis. The optimal duration of treatment with eculizumab remains to be determined.

Author/Foundation: Maro Ohanian, Christian Cable, Kathleen Halka

Year of publication: 2011, English

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aHUS Information Flyer

The basics of aHUS

Author/Foundation: Foundation for Children with Atypical HUS

Year of publication: 2011, English

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Press Release: Soliris Approval

Foundation for Children with Atypical HUS recognizes first treatment approved for extremely rare disease

Author/Foundation: Foundation for Children with Atypical HUS

Year of publication: 2011, English

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aHUS Stories of Hope

Stories of patients living with atypical HUS

Author/Foundation: Foundation for Children with Atypical HUS

Year of publication: 2011, English

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aHUS Resource List

Author/Foundation: Foundation for Children with Atypical HUS

Year of publication: 2011, English

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Atypical Hemolytic Uremic Syn. Articles

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Atypical Hemolytic Uremic Syn. 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

More info
June 2012
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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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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