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M-CM Network Macrocephaly-capillary malformation syndrome (M-CM, MCAP, M-CMTC) research and information

From Relay Therapeutics: Relay Therapeutic’s ongoing clinical trial, the ReInspire Study, is evaluating the safety and e...
09/09/2026

From Relay Therapeutics:

Relay Therapeutic’s ongoing clinical trial, the ReInspire Study, is evaluating the safety and effectiveness of the investigational drug, zovegalisib (RLY-2608), for PIK3CA-driven vascular malformations. Relay released initial data from the trial on May 19, 2026. You can review the initial results here:https://reinspirestudy.com/updates/plain-language-summary.pdf

Questions? Reach out to Relay at [email protected]. Learn more about the ongoing clinical trial on https://reinspirestudy.com/

See if you may qualify for the ReInspire Study, a clinical research study for individuals with PIK3CA-driven vascular malformations, including lymphatic malformations and PIK3CA-related overgrowth spectrum (PROS).

Open Access: Health-Related Quality of Life and Symptom Severity Among Patients With PIK3CA-Related Overgrowth Spectrum:...
07/24/2026

Open Access: Health-Related Quality of Life and Symptom Severity Among Patients With PIK3CA-Related Overgrowth Spectrum: A Mixed-Methods Study to Understand Real-World Experience With Alpelisib Treatment

Background PIK3CA-related overgrowth spectrum (PROS) includes several rare overgrowth disorders resulting from somatic gain-of-function mutations in PIK3CA. Despite treatment advances, including the...

Our next webinar is a patient/caregiver panel about the use of low-carbohydrate diets to address a range of issues relat...
07/01/2026

Our next webinar is a patient/caregiver panel about the use of low-carbohydrate diets to address a range of issues related to M-CM and PROS. Panelists from our community will share their experiences followed by questions and discussion. Mandy Sellars of the UK organization GoPI3Ks will join us.

Tuesday July 21st 1pm Eastern

Register at https://us06web.zoom.us/meeting/register/vWMq-9j5QnqNC3p3K7qH6A

Just getting back from five days of learning, collaboration, and advocacy at the International Society for the Study of ...
05/23/2026

Just getting back from five days of learning, collaboration, and advocacy at the International Society for the Study of Vascular Anomalies World Congress in Philadelphia.

Geweldig om zoveel patiëntenvertegenwoordigers van over de hele wereld samen te zien bij ISSVA 💙

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