RASOPATHIES NETWORK USA

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Altadena, CA   |  https://rasopathiesnet.org/

Mission

Our mission is to advance research to improve the quality of life for RASopathies families 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). RASopathiesNet is the product of RASopathies Network USA, a 501c3 Non-Profit, and RASopathies Network UK.

Ruling year info

2011

President

Lisa Schoyer

Secretary

Beth Stronach

Main address

244 Taos Rd

Altadena, CA 91001 USA

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EIN

27-3775851

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

7th International RASopathies Symposium

The 7th International RASopathies Symposium: Pathways to Understanding – Expanding Knowledge, Enhancing Research and Therapeutic Discovery was held July 23-25th 2021

Population(s) Served

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 2014

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Goals:

To build and cultivate a community of practice around RASopathies research, including:

1 Convening bi-annual symposia to bring families, clinicians and researchers together
2 Developing a discussion forum for professionals to foster collaborative research efforts
3 To develop and maintain family-friendly informational resources, including a bibliography for lay and professional audiences
4 Advancing research of the RASopathies - including Costello, CFC, Noonan, Neurofibromatosis type 1, LEOPARD/NSML, toward finding a cure.

1. Convene scientific meetings, which will include inviting family support groups for multiple RASopathy syndromes, in a meaningful way for families, clinicians, researchers and pharmaceutical industry representatives.
2. Expand a website that represents a major resource on RASopathy syndromes for families, clinicians, researchers and the pharmaceutical industry.
3. Strive to stay on the cutting edge of family and patient driven research.
4. Identify partners to support research on the RASopathy syndromes.

1. Ability to connect families, clinicians and researchers around the subject of the RASopathy syndromes.
2. Ability to raise funds adequate to meet our goals.
3. Ability to identify and collaborate with research-funding partners to provide grants to encourage research that benefits all the RASopathies.
4. Ability to continue to raise awareness leading to research of the Rasopathy syndromes.

To date in 2014, RASopathies Network USA:
1. Raised funds for a scientific research grant hosted and managed by the University of Pennsylvania’s CODRT (Center for Orphan Drug Research and Therapy)
2. Restructured the Scientific Advisory Board
3. Taken the lead in the planning and funding of the 4th International RASopathies Symposium (July 2015) including its first NIH R13 Research Meeting grant application
4. Participated in Rare Disease Day on Capitol Hill, In District Lobby Days and spoke at New Jersey State House to educate the government of the importance of NIH funding to advance rare disease research.
5. Invited to participate in the 3rd and 4th World Orphan Drug Congresses in Washington, DC; 3rd Global Genes RARE Patient Advocacy Summits; NORD conference; American Society of Human Genetics Meeting, American Association for Cancer Research Meeting, the European RASopathies Symposia, provided posters at all NCI RASopathies Initiative Symposia.
6. Increased the Board of Directors by two members.
7. Joined the Genetic Alliance, National Organization for Rare Disorders (NORD), Global Genes Foundation Alliance and Corporate Alliance.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Clinicians and researchers engaged in the RASoapthies, and families affected by a RASopathy

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Suggestion box/email, Collaborating w/partner family orgs of specific RASopathy syndromes to poll their constituents,

  • How is your organization using feedback from the people you serve?

    To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs w/respect to the RASopathies to achieve mutual goals,

  • What significant change resulted from feedback?

    Identifying and convening webinars, designing agenda for our next international symposium

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    Feedback continues to keep us relevant with respect to opportunities and programming.

  • Which of the following feedback practices does your organization routinely carry out?

    We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

RASOPATHIES NETWORK USA
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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RASOPATHIES NETWORK USA

Board of directors
as of 02/08/2022
SOURCE: Self-reported by organization
Board chair

Lisa Schoyer

Lisa Schoyer

Beth Stronach

Lee Johnson

Bruce Deckman

Cara Borian

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes

Organizational demographics

SOURCE: Self-reported; last updated 2/8/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Asian American/Pacific Islanders/Asian
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

No data