Thursday, November 24, 2016

Alstrom Syndrome













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.

http://www.alstrom.org/

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.