Disease, Disorders, Medical Disciplines

NATIONAL ORGANIZATION FOR ALBINISM AND HYPOPIGMENTATION

aka NOAH

E Hampstead, NH

Mission

NOAH's mission is to act as a conduit for accurate and authoritative information about all aspects of living with albinism and to provide a place where people with albinism and their families in the U.S. and Canada can find acceptance, support, and fellowship.

Ruling Year

1985

Executive Director

Michael McGowan

Main Address

PO Box 959

E Hampstead, NH 03826 USA

Keywords

education, advocacy

EIN

23-2265173

 Number

2983559217

Cause Area (NTEE Code)

Alliance/Advocacy Organizations (G01)

IRS Filing Requirement

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

Sign in or create an account to view Form(s) 990 for 2018, 2017 and 2016.
Register now

Social Media

Programs + Results

What we aim to solve

Albinism is a rare condition, affecting roughly one in 17,000 people. Because of this, accurate and authoritative information about albinism is not readily available to families of newly diagnosed children and medical professionals. This information void leaves the individual members of the albinism community on their own to learn about the condition. People with albinism and the parents of children with albinism must adapt to living with low vision and the stigma that comes with looking different. Emotional support for dealing with society’s sometimes hurtful treatment of disability and difference is needed in the albinism community. A person or family with albinism will often be the only such person or family in their neighborhood or town because albinism is rare. People with albinism and the parents of children with albinism often live in isolation and natural interaction with others with the condition is uncommon. People with albinism and their families need accurate information.

Our programs

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

SOURCE: Self-reported by organization

Biennial National Conference

Family Summer Camp

Where we work

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

NOAH strives to make accurate and authoritative information about all aspects of living with albinism available to those who have the condition and their families when they most need it. NOAH bridges the information gap by empowering those who are touched by albinism with resources related to low vision rehabilitation, early intervention, sun protection, genetics and self-advocacy. To support the unique social and emotional needs of our community, NOAH seeks to bring the albinism community together to share information, fellowship and support in person and virtually.

Use technology to collect and disseminate information about living with albinism and manage a network of those affected. Create and maintain a local structure to connect the albinism community geographically and virtually. Collaborate with vision service agencies, doctors, researchers, rare disease organizations and health advocacy groups. Develop and maintain a capable and committed board of directors to govern the organization and raise the funds required to accomplish NOAH’s mission. Raise the funds required to maintain programs and services through diverse campaigns. Host local and national educational and social events, including events targeted toward children with albinism, parents of newly diagnosed children and adults with albinism. Offer regular teleconferences and virtual trainings to address issues and concerns unique to our community. Publish a quarterly magazine, offering stories and news of interest to the albinism community, including the latest research, educational issues, human interest stories, personal accomplishments of members and international albinism affairs.

Dedicated and capable volunteers, and part time staff successfully: • Plan conferences and other events to bring the albinism community together • Publish materials about living with albinism • Maintain a large informational website • Disseminate news and information regularly through social media • Manage parent support programs • Maintain a member database • Advocate for people with albinism experiencing discrimination The board of directors and board committees consist of individuals with experience in law, finance, management, education, science and medicine, technology and Non-profit management.

NOAH’s progress is indicated by: • Increase the number of new contacts made each year • Increase the number of new parents requesting service • Increase attendance at NOAH conferences and events • Increase the number of hits on NOAH’s website • Increase participation in NOAH programs

Since 1982 NOAH has: • Built a database of over 13,000 individuals • Collected nearly 6,000 followers on Facebook • Held 17 national conferences • Held 9 family camps • Held 17 adult weekends • Published 2 parent books • Published 102 issues of a quarterly magazine • Distributed over 800 welcome toolkits to families of newly diagnosed children with albinism • Created resources to help parents advocate for their children with albinism in school • Held dozens of teleconferences and webinars • Connected hundreds of people locally NOAH will maintain existing programs and expand services to the albinism community by: • Increasing income through more grassroots fundraising, grant seeking, major donor recruitment and lifetime gifts • Building a network of trained local contacts • Hiring additional staff • Increasing collaboration with doctors, researchers and vision service agencies

External Reviews

Photos

Financials

NATIONAL ORGANIZATION FOR ALBINISM AND HYPOPIGMENTATION

Need more info on this nonprofit?

Need more info on this nonprofit?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

See what's included

Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

See what's included

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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 & 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