RASOPATHIES NETWORK USA

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Altadena, CA   |  http://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 Summit; NORD conference; American Society of Human Genetics Meeting.
6. Increased the Board of Directors by two members.
7. Joined the National Organization for Rare Disorders (NORD), Global Genes Foundation Alliance and Corporate Alliance.

Financials

RASOPATHIES NETWORK USA
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Operations

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

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RASOPATHIES NETWORK USA

Board of directors
as of 10/28/2021
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
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 10/28/2021,

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:

Gender identity
Female

The organization's co-leader identifies as:

Gender identity
Female

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data