| Informational |
| The
Children's Medical Research Foundation, Inc.: |
an organization formed to find a cure
for Sanfilippo Syndrome. |
| MPS
Forum Dot Com |
a Message Board for families of children
with special needs and, particularly, those affected by MPS. |
| Human
Genome Project Information |
an understandable guide to the complex
cellular processes involved in Lysosomal Storage Diseases |
| The
Carol Ann Foundation & International Morquio Organization
|
a mutual aid network for people who
have Morquio type A |
| Online
Mendelian Inheritance In Man |
follow this link to their Search Engine
to query the current medical knowledge on each of the MPS diseases.
|
| HealthFinder:
|
your guide to reliable health information
|
| Genetic
Alliance: |
an international coalition of consumer
and health professional organizations that supports individuals
with genetic conditions and their families, educates the public
and advocates for consumer-informed public policies |
| Office
of Rare Diseases: |
information on more than 6000 rare
diseases, including current research, publications from scientific
and medical journals, completed research, ongoing studies, and
patient support groups |
| N.O.R.D
(National Organization for Rare Diseases): |
unique federation of voluntary health
organizations dedicated to helping people with rare "orphan"
diseases and assisting the organizations that serve them. NORD
is committed to the identification, treatment, and cure of rare
disorders through programs of education, advocacy, research, and
service |
| PubMed:
|
a service of the National Library of
Medicine, provides access to over 11 million MEDLINE citations
back to the mid-1960's and additional life science journals. PubMed
includes links to many sites providing full text articles and
other related resources |
| BioMarin
Pharmaceuticals: |
BioMarin develops enzyme therapies
for serious, life-threatening diseases and conditions. They are
committed to improving the lives of patients by developing novel
enzyme therapies for currently unmet medical needs. |
| Genzyme:
|
Genzyme Corporation is a biotechnology company
that develops and markets innovative products and services for
unmet medical needs. |
| Global
Organization of Lysosomal Diseases (GOLD): |
GOLD is an international collaboration
dedicated to improving the lives of everyone with a lysosomal
disease. The website has information about LSDs and discussion
forums. |
| Shire
Pharmaceutical |
Shire (formerly Transkaryotic Therapies)
http://www.shire.com/shire/Shire
is a rapidly growing global specialty pharmaceutical company.
We have a global sales and marketing infrastructure with a broad
portfolio of products and our own direct marketing capability
in the US, Canada, UK, Republic of Ireland, France, Germany, Italy
and Spain. |
| Little
People of America: |
Little People of America, Inc., is
a nonprofit organization that provides support and information
to people of short stature and their families. |
| Dr.
Mike Brown's Education Website: |
Dr. Mike Brown's Education Website
is intended to provide parents, educators, psychologists, and
other service personnel information about the mucopolysaccharide
disorders. |
| The
Ryan Foundation: |
The Ryan Foundation is a 501(c)(3)
non-profit, all-volunteer organization dedicated to supporting
research for, and the families of, those suffering from Mucopolysaccharidosis,
or MPS. |
| MPSIDisease.com
|
MPSIdisease.com was created to provide
information regarding MPS I to patients, families, caregivers,
and health care professionals. Here you will find information
about the disease, support programs and online resources to manage
the challenges associated with MPS I. |
| Starbright.org
|
Interactive multi-media programs feature
information on IVs, blood tests, medical imaging, spinal taps.
|
| GeneClinics.com
|
GeneReviews (formerly known as GeneClinics)
entry on Mucopolysaccharidosis Type 1 |
| Aldurazyme.com
|
The links and information on this website are provided
by Genzyme Corporation and Biomarin Pharmaceuticals as a resource
for information on the approval of Aldurazyme(superscript: ?)
for the treatment of individuals with MPS I. Product information
published here applies only to health care professionals and patients
in the United States. At this time, Aldurazyme is not approved
in other countries. |
| Lysosomal
Learning |
Learn more about lysosomal storage disorders and
the science behind the diseases. Healthcare providers can get
detailed clinical information on lysosomal storage disorders,
including incidence, pathogenesis, diagnosis, treatment options,
and more |
| Hunterpatients.com
|
Resource center for the MPS II community to access
information about the genetics, diagnosis and management of MPS
II as well as information about the drug development process |
| Lysosomal
Disease Network |
The Lysosomal Disease Network is a research consortium
of scientists, laboratories, healthcare professionals and clinics
working as networked centers of excellence to improve basic knowledge
and understanding of lysosomal disorders, improve diagnosis, and
advance therapeutic options for individuals affected by these
disorders. |
| MPSVI.com
|
Provides education and information about MPS
VI for families, educators, and healthcare providers |
