Welcome to the personalized support of CareConnectPSS®
When you sign up for CareConnectPSS®, you will be introduced to your personal Patient Education Liaison and Case Manager.
Pompe Education
Pompe can be difficult to understand. CareConnectPSS® offers in-person and virtual disease and treatment education for you, your family, and other loved ones.
Insurance Coverage
Your CareConnectPSS® team are experts at navigating the healthcare system and can help you understand your benefit coverage and options.
Financial Assistance
Your CareConnectPSS® team can help you learn about other tools and financial resources to help you access treatment.
REAL LIFE
Hear how John faced his challenges
Learn about his diagnosis journey and how he discovered NEXVIAZYME
Join what’s NEX
Sign up for Pompe news, community support, and more.
You’re not alone
Here's a list of organizations* dedicated to rare diseases and the broader Pompe community.
Acid Maltase Deficiency Association (AMDA)
Promotes public awareness and funds research for acid maltase deficiency, another name for Pompe disease.
Pompe Alliance
Pompe Alliance is an organization dedicated to Pompe education, raising disease awareness, and providing helpful resources.
International Pompe Association
The International Pompe Association (IPA) is a federation of Pompe disease patient groups.
Muscular Dystrophy Association (MDA)
The #1 health nonprofit advancing research, care, and advocacy for people with MD, ALS, and related diseases.
Association for Glycogen Storage Disease (AGSD)
Provides information and support to parents and their children with glycogen storage diseases.
National Organization of Rare Disorders (NORD)
A federation of organizations working together to build a better world for people with rare diseases.
United Pompe Foundation
United Pompe Foundation assists patients and their families with medical costs and expenses that may not be covered by insurance.
Genetic Alliance
A nonprofit health advocacy organization committed to transforming health through genetics.
*The organizations and online resources listed above can provide information and support to patients and families living with Pompe disease through disease education; updates on research, clinical trials, and treatment advances; support groups and counseling; and more. Please note that the websites listed above are maintained by the sponsoring organizations; Sanofi therefore does not control and is not responsible for the content of these websites.
WARNING: SEVERE HYPERSENSITIVITY REACTIONS, INFUSION-ASSOCIATED REACTIONS, and RISK OF ACUTE CARDIORESPIRATORY FAILURE IN SUSCEPTIBLE PATIENTS |
WARNINGS AND PRECAUTIONS
Hypersensitivity Reactions Including Anaphylaxis: See Boxed WARNING. Your doctor may decide to give you antihistamine, anti-fever and/or steroid medications before your infusions. Your doctor should consider the risks and benefits of restarting the infusion if you have a severe hypersensitivity reaction (including anaphylaxis) to NEXVIAZYME. If a mild or moderate hypersensitivity reaction occurs, your healthcare provider may slow the infusion rate or temporarily stop the infusion.
Infusion-Associated Reactions (IARs): See Boxed WARNING. Your doctor may decide to give you medications before your infusions to decrease the risk of IARs; however, IARs may still occur after receiving these medications. If mild or moderate IARs occur, your healthcare provider should consider decreasing the infusion rate or temporarily stopping the infusion which may help improve the symptoms.
Risk of Acute Cardiorespiratory Failure in Susceptible Patients: See Boxed WARNING.
ADVERSE REACTIONS
The most common adverse reactions (>5%) were headache, fatigue, diarrhea, nausea, joint pain, dizziness, muscle pain, itching, vomiting, shortness of breath, rash, “pins-and-needles” sensation, and hives.
INDICATION
NEXVIAZYME (avalglucosidase alfa-ngpt) is used for the treatment of patients 1 year of age and older with late-onset Pompe disease [lysosomal acid alpha-glucosidase (GAA) deficiency].
Please see full Prescribing Information for complete details, including Boxed WARNING.
WARNING: SEVERE HYPERSENSITIVITY REACTIONS, INFUSION-ASSOCIATED REACTIONS, and RISK OF ACUTE CARDIORESPIRATORY FAILURE IN SUSCEPTIBLE PATIENTS |
WARNINGS AND PRECAUTIONS
Hypersensitivity Reactions Including Anaphylaxis: See Boxed WARNING. Your doctor may decide to give you antihistamine, anti-fever and/or steroid medications before your infusions. Your doctor should consider the risks and benefits of restarting the infusion if you have a severe hypersensitivity reaction (including anaphylaxis) to NEXVIAZYME. If a mild or moderate hypersensitivity reaction occurs, your healthcare provider may slow the infusion rate or temporarily stop the infusion.
Infusion-Associated Reactions (IARs): See Boxed WARNING. Your doctor may decide to give you medications before your infusions to decrease the risk of IARs; however, IARs may still occur after receiving these medications. If mild or moderate IARs occur, your healthcare provider should consider decreasing the infusion rate or temporarily stopping the infusion which may help improve the symptoms.
Risk of Acute Cardiorespiratory Failure in Susceptible Patients: See Boxed WARNING.
ADVERSE REACTIONS
The most common adverse reactions (>5%) were headache, fatigue, diarrhea, nausea, joint pain, dizziness, muscle pain, itching, vomiting, shortness of breath, rash, “pins-and-needles” sensation, and hives.
INDICATION
NEXVIAZYME (avalglucosidase alfa-ngpt) is used for the treatment of patients 1 year of age and older with late-onset Pompe disease [lysosomal acid alpha-glucosidase (GAA) deficiency].
Please see full Prescribing Information for complete details, including Boxed WARNING.