M-CM Network

02/27/2026

El 28 de febrero es el Día de las Enfermedades Raras

02/27/2026

Rare Disease Day is an opportunity for the entire rare disease community to come together in solidarity and mutual support. Having a rare disease requires incredible fortitude, resilience, and acceptance. Our patients deserve all of the care, research, treatments and support that they need to live their best lives.

02/24/2026

Researchers at Washington University in St. Louis have developed an innovative resource for vascular anomaly care. VAccess.org is a new website designed for patients, families, and clinicians, offering:

🫂 Patient support resources
📍 A directory of expert care centers
📚 Educational materials for families and clinicians
💬 An “Ask a Specialist” tool for clinicians to connect with VA experts

Join our meeting tomorrow February 25 at 12:00pm Eastern to learn more about VAccess and discuss your healthcare needs. Register: https://us06web.zoom.us/meeting/register/O7gb6JdeTBOIKLsRC25fKQ

VAccess is a new web resource for vascular anomaly care designed to support patients, caregivers, and clinicians. At VAccess.org, patients and caregivers can find educational resources, supportive services, and locate expert, multidisciplinary care. Clinicians can find educational documents written....

02/12/2026

Join us on February 25 to learn about a new resource, VAaccess. We will have a presentation followed by a discussion about how VAaccess can meet the community's needs and what other healthcare resources are needed. We will use a meeting format for community discussion.

12/30/2025

We had a such an exciting and productive 2025:

- Six monthly virtual Open Office hours built community and offered support among patient families.
- Four educational webinars brought expert perspectives to patients and providers on topics such as endocrinology and genetics.
- A paper is in the publication pipeline that uses data contributed by patient families to better characterize the complexity of M-CM / MCAP.
- Our calendar featuring nearly 100 patients has been distributed to dozens of medical and research professionals.
- We are in communication with pharmaceutical companies about additional possible treatments in development.
- A coveted Rare Disease Clinical Research Network grant has been awarded to a consortium of vascular anomalies clinicians to study patient populations including PIK3CA-related overgrowth spectrum. *This grant requires patient advocacy involvement.*

We will build on all of these in the coming year. There are two more days to support our work in 2025.
You can give online today at
https://m-cm.net/donate

Or by mail:
M-CM Network
PO Box 97
Chatham NY 12037

Many of you have already made a year-end contribution -- we are so appreciative of your support.

Sincerely,
Christy Collins, President
M-CM Network

12/02/2025

Leslie is on our Board and has been such a rock of support since our founding. THANK YOU Leslie.

Send a message to learn more

12/01/2025

‼️The House of Representatives has passed the Give Kids a Chance Act (H.R. 1262)‼️

This key piece of legislation includes policies that will spur progress in therapy development for rare diseases, specifically through the reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program. Today’s milestone comes as a result of community-driven advocacy and dedication from rare disease patients, families, organizations, and others who shared their stories and used their voices to ensure Congress took action. You made this happen! To learn more, visit our website ➡️ https://everylifefoundation.org/the-everylife-foundation-applauds-house-passage-of-the-give-kids-a-chance-act/

We're one step closer to reauthorizing the PRV Program. With the House of Representatives' support behind us, we must urge our Senators to follow suit! Tell your Senator to support the Give Kids a Chance Act now ➡️ https://everylifefoundation.quorum.us/campaign/110385/

11/28/2025

Read our latest email
https://mailchi.mp/c8fabced885b/sale-giving-exciting-research-news

11/28/2025

Get 30% off our calendar with code BOOKGIFT30 through December 1st

https://www.lulu.com/shop/m-cm-families/m-cm-network-2026-wall-calendar/paperback/product-v8me2j5.html