Overview
What is Hermansky Pudlak Syndrome Network?
The Hermansky Pudlak Syndrome Network is a nonprofit organization situated in Oyster Bay Cove, New York. Their primary objective is to provide support, advocacy, and education to individuals and families affected by Hermansky-Pudlak Syndrome (HPS). They achieve this by compiling patient data to aid in research, organizing conferences to collect and disseminate disease-related information, and creating and distributing healthcare materials and resources. Moreover, they fund and facilitate HPS research, aiming to enhance understanding and potential treatments for this rare genetic disorder.
Official website here: www.hpsnetwork.org
What do the Facebook reviews say about Hermansky Pudlak Syndrome Network?
94% of 38 reviewers on Facebook recommend the Hermansky Pudlak Syndrome Network. The feedback highlights a strong appreciation for the wealth of information provided about the condition, significantly aiding parents in understanding and coping with Hermansky Pudlak Syndrome.
Many users express gratitude for the supportive community and the resources available, noting that the network helps them feel less isolated in their experiences. The ability to see that their children are not alone in facing this condition is particularly valued, creating a sense of connection and hope.
Overall, the organization appears to effectively support families by providing crucial information and fostering a sense of belonging among those affected by HPS.
This AI summary has been generated from reviews found on Facebook.
Is Hermansky Pudlak Syndrome Network legitimate?
Hermansky Pudlak Syndrome Network is a legitimate nonprofit organization registered as a 501(c)(3) entity. Hermansky Pudlak Syndrome Network submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Heare are some key statistics you may want to consider:
Executive Compensation: $0
Professional Fundraising Fees: $0
Other Salaries and Wages: $64,933
For more financial information, click here
Official website here: www.hpsnetwork.org
What is the mission statement of Hermansky Pudlak Syndrome Network?
The Hermansky Pudlak Syndrome Network's mission is centered around providing support, advocacy, and education to individuals and families affected by Hermansky Pudlak Syndrome. They actively fund and facilitate research related to the condition and develop and produce necessary healthcare resources. The organization compiles patient data to aid in research efforts and conducts conferences to disseminate disease information. Additionally, they offer information and assistance to affected families, serving as a valuable resource in their journey.
Official website here: www.hpsnetwork.org
Who is the CEO of Hermansky Pudlak Syndrome Network?
Donna Appell is the President of Hermansky Pudlak Syndrome Network.
Official website here: www.hpsnetwork.org
What is the revenue of Hermansky Pudlak Syndrome Network?
Hermansky Pudlak Syndrome Network's revenue in 2022 was $425,722.
Official website here: www.hpsnetwork.org
Who are the executives of Hermansky Pudlak Syndrome Network and what are their salaries?
The average compensation at Hermansky Pudlak Syndrome Network during 2022 was $12,987. There are 5 employees at Hermansky Pudlak Syndrome Network.
Here are 3 key members and their salaries:
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
Official website here: www.hpsnetwork.org
Where can I find the form 990 for Hermansky Pudlak Syndrome Network?
Hermansky Pudlak Syndrome Network's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.hpsnetwork.org
Learn more at the official website: www.hpsnetwork.org
Mission Statement of Hermansky Pudlak Syndrome Network
The Hermansky Pudlak Syndrome Network, a nonprofit organization, is committed to providing support, advocacy, education, and hope to individuals and families affected by Hermansky Pudlak Syndrome (HPS). The organization plays a significant role in funding and facilitating research related to this condition. In addition, they develop and produce materials and resources for healthcare professionals, aiming to enhance the understanding and treatment of HPS.
The network's mission extends beyond research and resource development. They also compile patient data to aid in ongoing research, organizing conferences to disseminate disease information, and offering information and support to families affected by HPS. By doing so, they aim to foster a sense of fellowship among affected individuals and their families, providing them with a platform to connect and share experiences. This holistic approach to supporting those with HPS ensures that they are not only informed about their condition but also have access to a supportive community.
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Impact
October, 2024
The Hermansky-Pudlak Syndrome Network significantly impacts individuals and families affected by Hermansky-Pudlak Syndrome (HPS) through various initiatives focused on advocacy, education, and research. By providing vital support and resources, it helps families navigate the complexities of living with HPS, fostering a sense of community and shared understanding.
The Network compiles patient data to assist in ongoing research, ensuring that scientific inquiry is informed by real-world experiences. This data collection not only aids in the advancement of knowledge about HPS but also helps in the development of better healthcare strategies for affected individuals.
In addition, the organization organizes conferences that serve as platforms for collecting and disseminating important disease-specific information. These gatherings facilitate networking among families, healthcare professionals, and researchers, promoting collaboration and collective learning.
Furthermore, the Hermansky-Pudlak Syndrome Network produces educational materials and resources tailored for healthcare providers and patients alike, enhancing their understanding of the syndrome and improving care delivery. Overall, the Network plays a crucial role in fostering hope, connection, and progress within the HPS community.
This information is meant to be a general summary of Hermansky Pudlak Syndrome Network. Please take the time to review official sources before making any decisions based upon the content provided here.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Investment Income: $163
- Gross Receipts: $425,722
Assets and Liabilities:
- Total Assets: $559,842
- Total Liabilities: $15,905
- Net Assets: $543,937
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Organization Details
Founding Year
1992
Phone
(800) 789-9477Principal Officer
Donna Appell
Main Address
ONE SOUTH ROAD, OYSTER BAY COVE, NY, 11771
Website
www.hpsnetwork.orgNTEE Category
Code: P20Z - Human services
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