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Lysosomal Storage Disorders |
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| www.lda.org.au |
| Lysosomal
Diseases Austrailia |
| LDA is a national umbrella organization
formed to represent the interests of people
effected by lysosomal storage disorders including
their families and care givers, and to maximize
resources available for support services,
treatment and research. |
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| www.ldnz.org.nz |
| Lysosomal Diseases New
Zealand (LDNZ) |
| LDNZ is committed to improving contacts,
information sharing and support among affected
people and their families, within New Zealand
and internationally; To advocate for and support
accelerated research into the causes and treatment
of Lysosomal Storage diseases; To advocate
for and support improvements to the clinical
care of affected people. |
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| http://www.vml-asso.org |
| Vaincre les Maladies Lysosomales-France (VML) |
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Mucopolysaccharidosis (MPS) |
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| www.MPSIdisease.com |
| MPS I |
| This website was
created to provide information regarding MPS
I to patients, families, caregivers, and health
care professionals. The site contains information
about the disease, support programs and online
resources to manage the challenges associated
with MPS I. |
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| www.MPSVI.com |
| MPS VI Resource Center |
| This website was
created to provide information regarding MPS
VI to patients, families, caregivers, and
health care professionals. The site contains
information about the disease, support programs
and online resources to manage the challenges
associated with MPS VI. |
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| www.morquio.com |
| Morquio Parent Support Group, International Morquio Organization |
| The International Morquio Organization is dedicated to seeking out people who have Morquio Type A in order to provide a mutual aid network; act as a advocate between patients, physicians and scientists; compile medical information into a database; and pursue funding for education, families and research. The site provides an MPS IVA patient registry and links to other support and advocacy groups. |
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Phenylketonuria (PKU) |
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| www.pkunews.org |
| National PKU News |
| National PKU News is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria. |
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| www.pku-allieddisorders.org |
| National Coalition for PKU and Allied Disorders |
| The National Coalition seeks to improve identification, treatment, and management of PKU and allied disorders through advocacy education, support, promotion and support of research and services. The site provides helpful hints, recipes and other supportive mechanisms for those living with PKU. |
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| www.PKUNetwork.org |
| Children’s PKU Network (CPN) |
| CPN is dedicated to raising public awareness, educating and providing direct assistance through a variety of programs, and to helping people with PKU and other metabolic disorders reach their full potential. |
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Genetic/Rare Diseases |
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| www.geneticalliance.org |
| The Genetic Alliance |
| The Genetic Alliance is dedicated to helping individuals and families with genetic disorders. The site provides information about a broad spectrum of genetic diseases and links to numerous resource organizations. |
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| www.climb.org.uk |
| Children Living With Inherited Metabolic Disease (CLIMB) |
| CLIMB is committed to fighting metabolic diseases through research, awareness and support. The organization is dedicated to providing advice, information and support on all metabolic diseases to children, young adults, families, care givers and professionals. |
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| www.netnet.net/mums/whatis.htm |
| MUMS |
| MUMS is a national parent-to-parent organization for parents or care providers of a child with any disability, rare or not so rare disorder, chromosomal abnormality or health condition. MUMS provides support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. |
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| www.rarediseases.org |
| National Organization for Rare Disorders (NORD) |
| NORD is the federation
of voluntary health organizations dedicated
to helping people with rare ‘orphan’
diseases and assisting the organizations that
serve them. The site provides searchable indexes
and databases of rare diseases and organizations,
a medication assistance program as well as up-to-
date news and information. |
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Additional Resources |
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| www.kuvan.com |
| www.ncbi.nlm.nih.gov/entrez/query.fcgi |
| PubMed |
| PUBMED is the U.S. National Library of Medicine’s free access to the MEDLINE database. The site contains a vast collection of published medical information from scientific and medical journals. |
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| www.NIH.gov |
| The National Institutes of Health (NIH) |
| The NIH is the premiere medical research organization for the United States . This site provides information about scientific research, drug therapies, and clinical trials. |
Note: These listings are provided by BioMarin as additional information for patients, their families and their healthcare providers. The web pages and their content are maintained by the organizations listed above. With the exception of its own websites, BioMarin does not endorse any particular organization or the content contained on their website. |
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