Discussion list Sanfilippo EURORDIS

The Alliance

Mission Statement
Projects in process
Join us

Mission Statement

The Sanfilippo Alliance is an organization of parents committed to accelerating the pace of biomedical research in MPSIII. Founded in 2005 by parents of affected children, the organisation aims at becoming a leading provider of support for MPSIII research and resources throughout Europe.

The Sanfilippo Alliance’s primary focuses are:

- Federate MPSIII patients’ families throughout Europe,

- Being a reference for the other MPS associations and more precisely MPSIII patients’ families organisations throughout the world,

- Raise money to fund high potential essential research and ultimately clinical trials,

- Make its best efforts to accelerate stekeholders’ interest for Sanfilippo Syndrome : researchers, biothechs and pharmaceutical groups, regulatory authorities, ethical committees, medicine agencies, clinicians, public, other organisations.

Projects in process

Core projects have promptly been launched since the creation of the Alliance:

- building a community of MPSIII patients families.

- completing the White Paper project of the Alliance Sanfilippo: A state of the art report on the research in MPSIII worldwide with an aim to boost the funding of the high potential teams. Please, register here.

- building the Internet website of the Alliance Sanfilippo: a networking platform meant to help informing, exchanging, lobbying.

- build a strong relationship with the scientific researchers.

- build mature rand durable relationships with specialised biotechs.

Join us

You may join us because you are a patient family. Click here.
You may help us as an individual or a company. Click here.

Our address :
Alliance Sanfilippo
BP 88
92203 Neuilly sur Seine Cedex

Therapeutic Approaches
Personal Stories

Alliance Sanfilippo - BP 88 - 92203 - Neuilly sur Seine Cedex - France - Tel. + 33 6 14 03 84 87