DISCLAIMER
The information and materials accessed through or made available for use on any of our Sites, including, any information about diseases, conditions, treatments, or medicines, are for informational purposes only. The Content is not intended to be and is not a substitute for professional medical advice, diagnosis, or treatment, and your participation on our Sites does not create a healthcare professional-patient relationship. You should consult a doctor or other qualified health care professional regarding any questions you have about your health or before making any decisions related to your health or wellness. Call your doctor or 911 immediately if you think you may have a medical emergency.message sent
email sent successfully
rareLife solutions 606 Post Road East #397 Westport, CT 06880 |
||
You are receiving this because you have an account on www.oneMPSvoice.com | ||
To unsubscribe from these emails, click here |
Trusted Resources: News & Meetings
Latest announcements and gatherings
Losing Stanley – My Little Boy Doesn’t Recognise Me Anymore
Little Stanley Barnes was diagnosed with ‘childhood Alzheimer’s’ when he was just 16 months old and can no longer recognise his mum Mari Barnes at the school gates. Now eight, Stanley is living with Sanfillipo, a condition likened to Alzheimer’s, that means he can no longer communicate with his parents or remember everyday words.
While he remains active, his mum Marie, 40, says she feels like she is losing part of him everyday. She is now telling her story in order to raise awareness of the condition, as she says her son has “dramatically” gone downhill this year.
Related Content
-
news & meetingsSanfilippo Ideal for FDA’s Accelerated Approval Pathway, Foundation SaysThe Cure Sanfilippo Foundation is encour...
-
news & meetingsEurope Grants Orphan Drug Status to JR-441, ERT for Sanfilippo AThe European Commission has granted an o...
-
educationGastrointestinal Manifestations in Mucopolysaccharidosis Type III: Review of Death Certificates and the LiteratureMucopolysaccharidosis type III (MPS III,...
-
educationYoung Adults With Hunter Syndrome (MPS II)Hunter syndrome impacts many aspects of ...
-
people & placesCure MucolipidosisCure Mucolipidosis is a non-profit organ...
-
Community CenterSanfilippo Children’s Foundation – FacebookSanfilippo Children's Foundation is a no...
-
educationDifferences in Gene Expression Patterns, Revealed by RNA-Seq Analysis, Between Various Sanfilippo and Morquio Diseas...Mucopolysaccharidoses (MPS) are genetic ...
send a message
Reset password
password changed successfully!
please log in with your email address and new password.
your activation key expired
this confirmation key has expired. please try to log in again or resend confirmation email.
confirmation email sent
a confirmation email has been sent to your inbox. click the link in the email to activate your account.
can't find the email? be sure to check your spam folder.
password reset email sent
an email has been sent to you with a link to reset your password.
can't find the email? be sure to check your spam folder.
If you are a doctor or other qualified health care professional, you should not offer any medical advice or treatment on our Sites, nor should you allow the content of our Sites to substitute for your own medical judgment. Please thoroughly review the information provided on our Sites before deciding whether any of the products, services, or treatments therein are right for you or others.
your account is now activated!
Log in
This feature is only available to members.
you haven't confirmed your email address yet. resend confirmation email
Want to find the info you need faster?
The symptoms of Mucopolysaccharidosis and the treatments that are available vary depending on which type of Mucopolysaccharidosis a patient has been diagnosed with. Select which type you want to learn more about, and can highlight the resources that are most relevant to your MPS/ML type.
Not now