Disease, Disorders, Medical Disciplines

AMERICAN RSDHope GROUP

  • Harrison, ME
  • http://www.RSDHope.org

Mission Statement

When Keith Orsini was diagnosed with Reflex Sympathetic Dystrophy Syndrome (RSDS) in April of 1993, we discovered that his Doctor could give little more than a name for his condition. We searched everywhere but found a HUGE hole where information should have been. As we searched more, we then compiled such a huge wealth of information that it compelled us to find a way to share this information with patients and the Health Professionals charged with their care. Early proper diagnosis and treatment would help these patients to avoid a lifetime of pain caused by this progressive disease of the Autonomic Nervous System. Originally incorporated in 1995, we received our 501(C)(3) status and known as of 2008 as AMERICAN RSDHope. Our purpose is to make information available, on a National level to patients, their families,loved ones and Health Care Professionals. Our internet presence is www.RSDHope.org

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ruling year

1996

Principal Officer

Self-reported

Mrs. Lynne (Marilyn) Orsini

Keywords

Self-reported

RSDHope,Reflex Sympathetic Dystrophy Syndrome, RSDS, RSD, CRPS, Chronic Regional Pain Syndrome,Sudek

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Also Known As

RSDHope

EIN

01-0502619

Contact

Cause Area (NTEE Code)

Nerve, Muscle and Bone Diseases (G50)

Graduate, Professional(Separate Entities) (B50)

Graduate, Professional(Separate Entities) (B50)

IRS Filing Requirement

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

Programs + Results

How does this organization make a difference?

Programs

Self-reported by organization

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

Program 1

Our name, AMERICAN RSDHope, reflects the broad reach of our services. Our Internet presence, www.RSDHope.org,as of August, 2008, reached over 9,628,000 visitors from the United States and around the world. Besides having a very large amount of medical information on the disease itself, the web site provides Medical Articles, Articles on Coping with Pain, and on Living with RSDS with help for the entire family. The site offers specific support to all age groups from pre-teens to retired folks. In partnership with the internet programs and information, we have a postal mailing list, used to reach thousands of RSDS patients without internet access. The American RSDHope National Conferences draw Nationwide attendance and are geared to RSDS Patients, Families and Health Professionals. All of our patient programs target the entire family, because Chronic Pain diseases affect not only the patient, but also those around him/her. The Hope is to increase awareness throughout the entire spectrum from the general public to healthcare professionals. In addition, we offer a number of products designed to generate awareness for Reflex Sympathetic Dystrophy. Finally, we have established the Hope For Tomorrow Research Fund. This Research Fund is a significant effort that is unique in that NO administrative costs are charged to this fund. Every dollar donated to this fund WILL ONLY BE USED FOR RSDS RESEARCH.

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Population(s) Served

Budget

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Financials

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Operations

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

AMERICAN RSDHope GROUP

Leadership

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  • Forms 990 for 2011, 2010 and 2009
  • Board Members
  • Access to the GuideStar Community
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Principal Officer

Mrs. Lynne (Marilyn) Orsini

BIO

Mrs. Orsini is a co-founder of American RSDHope and so has been with the organization since its inception.

Governance

BOARD LEADERSHIP PRACTICES

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RESPONSE NOT PROVIDED

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?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?