ISMRD International Conference for Glycoprotein Storage Diseases Coming This July

Upcoming Conference The International Society for Mannosidosis & Related Diseases (ISMRD) serves as an international patient advocate for those living with glycoprotein storage diseases. These include alpha-mannosidosis, fucosidosis, mucolipidosis type…

Continue Reading ISMRD International Conference for Glycoprotein Storage Diseases Coming This July
Go to Italy in November for the 5th International Conference for Glycoprotein Storage Diseases
Source: Pixabay

Go to Italy in November for the 5th International Conference for Glycoprotein Storage Diseases

This year, The International Advocate for Glycoprotein Storage Diseases (ISMRD) has moved their International Conference from the US to Rome, Italy! The ISMRD is a non-profit who aims to be…

Continue Reading Go to Italy in November for the 5th International Conference for Glycoprotein Storage Diseases

Editor’s Choice: Staying Strong, Fighting for Treatment, and Feeling Vulnerable- Just Another Day in the Life of Rare Patients

Happy Father's Day Weekend Patient Worthians! This week we have an amazing essay written by CMT Warrior Sarah Magno regarding her personal experience overcoming rare disease obstacles. We also have some…

Continue Reading Editor’s Choice: Staying Strong, Fighting for Treatment, and Feeling Vulnerable- Just Another Day in the Life of Rare Patients

Editor’s Choice: CRPS Life, Diagnosis Grief, and Cancer Wars

Happy Friday Patient Worthians! This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses living with CRPS and other…

Continue Reading Editor’s Choice: CRPS Life, Diagnosis Grief, and Cancer Wars
Close Menu