The importance of a natural history study
AllStripes is proud to partner with CLOVES Syndrome Community and LGDAlliance to further rare disease research. This collaborative webinar discusses the importance of a natural history study and how people affected by complex lymphatic anomalies (CLA) and PIK3CA-related overgrowth spectrum (PROS) can help power research from their homes.
Specific PROS conditions include the following: CLAPO syndrome, CLOVES syndrome, facial Infiltrating lipomatosis (FIL), fibroadipose hyperplasia (FAO/FH), fibro-adipose vascular anomaly (FAVA), hemihyperplasia-multiple lipomatosis syndrome (HHML syndrome), hemimegalencephaly (HME), Isolated Lymphatic Malformations (ILM), Klippel-Trenaunay syndrome (KTS) and megalencephaly-capillary malformation syndrome (M-CM/MCAP).
Specific CLA conditions include the following: Central Conducting Lymphatic Anomaly (CCLA), Generalized lymphatic anomaly (GLA or Lymphangiomatosis), Gorham-Stout disease (GSD) and Kaposiform lymphangiomatosis (KLA).
AllStripes is a platform that makes it easy for rare disease patients and caregivers to contribute to drug development research from home.
AllStripes improves the speed and design of drug trials by extracting and analyzing research-grade data from de-identified medical records, creating a pool of new knowledge about each rare condition.
Get in touch
If you have additional questions, feel free to contact us:
CLOVES Syndrome Community