Sunday, June 12, 2011
Alstrom Syndrome International
Hello, I have copied and paste this post from the
following website. Please visit this website to learn
and help with a cure for this disease.
The mission of Alstrom Syndrome International (ASI) is:
To provide support, information, and coordination world
-wide to families and professionals in order to treat and
cure Alstrom Syndrome. Alstrom Syndrome is a rare
genetic disorder that affects children from birth. They
will become blind, hearing impaired, and suffer from
diabetes as well as enduring multiple organ failure,
including the heart, liver, lungs, and kidneys.
Alstrom Syndrome affects children of all nationalities and ethnicities.
There is no cure yet for Alstrom Syndrome, so physicians
and researchers are working to better understand the
complexities of how the "Alstrom gene" works, and
to develop better treatments for the multitude of problems
faced by children with this syndrome. The main program
areas of Alstrom Syndrome International are Research,
Education, and Family Support. Through its extensive
contact with families, physicians, and researchers,
ASI is building a solid core of knowledge and understanding
about Alstrom Syndrome.
One of the main goals of ASI is to promote, encourage,
and contribute to medical research for better treatments
and therapies, while remaining focused on an eventua
l cure for Alstrom Syndrome. International Conferences
make it possible for families, care givers, and professionals
to hear current information on Alstrom Syndrome presented
by experts on the Syndrome. They offer a unique setting for
mutual sharing and support. Conferences provide families
with individual consultation, workshops, and countless
opportunities to meet and socialize with others, including
professionals. Each conference incorporates a "research
clinic" where data is collected that can be shared with
professionals around the world. The ASI Scientific
Advisory Board ,a caring group of specialists, is 'on-call'
to offer help regarding health, development, and education
issues. Contacting the foundation office can access these
professionals. Educational materials focus on pertinent
issues and concerns related to Alstrom Syndrome.
The Family Packet includes information on such matters as the
complex clinical features of Alstrom Syndrome, what is
known about the ALMS1 gene, and provides a compilation
of medical information on Alstrom Syndrome.