Rasopathies Network USA

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Nonprofit Overview

Mission: Our mission is to advance research of the RASopathies by bringing together families, clinicians and scientists. RASopathies are a group of genetic syndromes that are as common as 1:1000. The RASopathy syndromes include: cardio-facio-cutaneous (CFC), Costello (CS), LEOPARD/NSML, Neurofibromatosis type 1 (NF1), Noonan (NS) and Legius (LS).

Community Stories

5 Stories from Volunteers, Donors & Supporters

Be_Kind Board Member

Rating: 5

09/15/2024

Rasopathies Network is an exceptional organization dedicated to funding research that advances our understanding of RASopathies. By connecting families, patients, and researchers, the network is pivotal in driving scientific discovery and fostering a deeper comprehension of these complex conditions. Their commitment to promoting research creates hope for future treatments and therapies, while also providing a supportive community for those affected by RASopathies.

As a board member, I am proud to be part of an organization that prioritizes research as the key to unlocking better outcomes for patients. Rasopathies Network advocates for increased research funding and ensures that families have access to the latest scientific findings and resources. The organization is a true leader in the effort to understand and ultimately treat RASopathies, and its impact is felt by families worldwide.

NSadvocate Volunteer

Rating: 5

11/27/2014

The Rasopathies Network has enabled increased dialogue between both the clinician and research community and the patient advocacy groups of the RASopathies. This without a doubt benefits all involved, with better understanding of this group of conditions, increased communication between researchers and researchers & advocates, and a way to partner with each other to move forward to produce best practices on managing these conditions, to future therapeutic goals.

Rare Champ Professional with expertise in this field

Rating: 4

11/17/2014

As a colleague within the rare disease community, it is critical to see progressive organizations like Rasopathies Network move forward with a culture of collaboration. They work well within the rare disease community, are innovative in their approach to advocacy and are on the front lines related to research for Rasopathies. Well networked, and well liked, I believe that the leaders in this organization bring a professionalism not always found in young non-profits.

KWGripp Professional with expertise in this field

Rating: 5

11/17/2014

The Rasopathies Network USA grew out of the shared needs and interests of the families affected by the different conditions. My personal interest was focused primarily on Costello syndrome, and I collaborated with the family support group since their meeting in 2001, organized and hosted the Costello syndrome meeting in 2003 and attend the biannual meetings ever since. These biannual meetings have grown to include CFC and Noonan syndrome. Clinicians and researchers working with any of these conditions now come together and the Rasopathies Network hosts and organizes a scientific symposium coinciding with the family support group meetings. The combined meetings allow for a unique opportunity to interact with patients and families, clinicians with a focus in different areas and researcher interested in the RAS/MAPK pathway. The Rasopathies Network offers a website to enable such connections on an international level at any time. Further, the network sets a new standard for collaborations between patient support groups, clinicians, researchers and industry interested in drug development.

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M_Grund Board Member

Rating: 5

11/13/2014

As a newly appointed member of the board of this amazing organization, I feel compelled to compliment my fellow volunteer board members. Nowhere have I met a more devoted team of people dedicated to raising awareness and seeking quality of life improvements for those diagnosed with a RASopathy syndrome. They strive to bridge the gap between families, clinicians and scientists. I feel our team goes above and beyond the call of duty to ensure the organization is successful, reputable and transparent. Families affected by a RASopathy syndrome, including my own, owe much to this passionate team.

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