Patient Groups

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Name

AKU Society

Location

Cambridge, UK

Contact

Nick Sireau; nick@akusociety.org

Website

http://www.akusociety.org/

Description

The AKU Society is a UK patient group, supporting those diagnosed with alkaptonuria. Founded in 2003, the group has over 10 years experience of the disease. The group initiated the start of DevelopAKUre in order to properly assess nitisinone as a potential treatment for AKU patients.

The AKU Society lead on patient identification, recruitment and support for all patients enrolled at the three clinical sites across Europe. It also leads on dissemination of the project.


 

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Name

ALCAP

Location

Paris, France

Contact

Serge Sireau (serge.alcap@gmail.com)

Website

http://alcap.fr/

Description

ALCAP (Association pour la Lutte Contre l’Alcaptonurie) is a French patient group, supporting those diagnosed with alkaptonuria. Founded in 2006, it represents over 70 members in France.

ALCAP leads on patient identification, support of the French patients enrolled into the clinical site at Hôpital Necker and on dissemination of the project in French-speaking countries.


 

 
 

Welcome To DevelopAKUre


DevelopAKUre is a series of major international clinical trials, run by a consortium of 12 European partners. It aims to study a potential new drug, called nitisinone, and assess its potential effectiveness in treating the rare disease, alkaptonuria (AKU).

DevelopAKUre is co-funded by a grant from the European Commission. This website is run by a UK patient group, the AKU Society. Learn more about AKU on the AKU Society's What is AKU page.

 

DevelopAKUre Blog

SONIA 2 – Controlling Protein to Support Nitisinone Treatment
11-Jul-2017

In today’s blog Chief investigator Prof. Ranganath reinforces the need for SONIA 2 pat.. ...more

Introducing PhD Student Brendan Norman
16-Feb-2017

In this week's blog, we talk to Brendan Norman, a PhD student at the University Of Liverpool, ab.. ...more