GOLD2023

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

aka LGDA   |   Saint Petersburg, FL   |  www.lgdalliance.org

Mission

We connect patients and families to peers and networks of care, partner to advance new research, and educate the medical community to help all people navigating complex lymphatic anomalies have hope for a healthier tomorrow.

Ruling year info

2008

Executive Dirctor

Michael Kelly MD, PhD

Main address

7901 4th St. North

Saint Petersburg, FL 33702 USA

Show more contact info

EIN

26-1224181

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?

:Patient Support Services

Supporting patients is at the root of everything we do. LGDA helps patients and their families navigate complex lymphatic anomalies (CLAs) by providing them with educational resources, support services and access to networks of peers and heath care professionals. We help the community obtain the medical, social, and emotional support they need with empathy and understanding.

LGDA’s three main objectives:

Identify patient resource needs through our registry, direct communication, and patient groups and forums. We aggregate available high-quality resources while identifying gaps and developing missing resources that are shared with the patient community.

LGDA connects the patient community to medical professionals, national and international.

LGDA fosters connections to peers and health care professionals that improve the social-emotional wellbeing of the patient community.

Population(s) Served
Chronically ill people
Terminally ill people

LGDA is uniquely positioned to unite the scientific, medical, and patient communities to develop, pilot, and implement patient-centered norms for care. We expect this will increase awareness of CLA and best practices for diagnosis and treatment, and drastically improve the quality-of-care patients receive globally.
We will establish and international committee to oversee the guideline development and promotion process. Members will include medical experts, patients and representatives of key partner organizations and medical societies. Guidelines will be developed using current best evidence and multidisciplinary consensus to prioritize recommendations.

Once developed and approved the guidelines for care will be widely disseminated in the medical and patient communities. They will be translated into several languages to facilitate global dissemination. We will ensure our guidelines are widely accessible without subscription.

Population(s) Served

LGDA serves as the nexus between patient, scientific, medical, and industry networks. We identify innovative researchers and help them secure funding, publish their work, and share it with peers and the patient community. We ensure that the patient community has a voice in shaping patient-centered research outcomes. We foster collaboration between these groups to strengthen the broader CLA community’s understanding of current research.

We partner with our patients, key organizational partners and with our medical and scientific advisory committee, to identify gaps in research that should be targeted for further investigation and funding.
LGDA identifies and supports promising young researchers who are undertaking innovative research early in their careers to nurture their interest in CLA, and to create a pipeline of next generation researchers.

We create patient-friendly research summaries and ensure that research is accessible and clear to all audiences.

Population(s) Served
Chronically ill people
Terminally ill people
Chronically ill people
Terminally ill people

Where we work

Financials

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC
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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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LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Board of directors
as of 03/06/2023
SOURCE: Self-reported by organization
Board chair

Scot Wiesner

Tiffany Ferry

LMI Institute

Scott Goldfarb

Mitch Maersch

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? No
  • 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? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • 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 2/27/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data