Pathways for Rare and Orphan Studies

Our passion is Rare.

aka PROS Foundation   |   San Clemente, CA   |  www.prosfoundation.org

Mission

As a 501(c)(3) non-profit, our mission is to help prepare patient advocacy groups for clinical trials. We are committed to connecting with rare disease focused patient advocacy groups to guide them towards readiness for natural history studies or the clinical trial phase. A key part of that is to help them to develop a patient registry.

As patient advocacy groups are worldwide, our organization aims to work and partner around the world as we also do not want to duplicate efforts.

Ruling year info

2012

Founder and President

Ellen Morgan

Main address

3817 Calle Tiburon

San Clemente, CA 92672 USA

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EIN

45-2238192

NTEE code info

Alliance/Advocacy Organizations (E01)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Science and Technology Research Institutes, Services N.E.C. (U99)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

When a Pharmaceutical, Biotechnology, or Academic group (“Sponsor") embarks on a clinical development program for a common disease, there is typically a wealth of information in the literature and trials conducted previously to use in designing a trial. Information is readily available about disease progression, appropriate endpoints, timing of endpoints, etc. With a rare disease, there is often very little information available to aid in study design. Sponsors may have two options: 1) running natural history studies to gather sufficient information to adequately design the trials, which can add several years to the clinical development program, or 2) Proceeding with a clinical trial based on limited data, increasing the chance that the studies will fail. Patient organizations that are able to collect data from patients over time prior to the start of a clinical development program can significantly increase the chances of success of a drug development program.

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?

HLH Registry

Though this scope continues to evolve, it currently involves creating a registry for a collective grouping of 10 or more rare diseases so that the data can be combined and help the patients, their families and their researchers take a positive step forward towards a treatment or a cure.

Population(s) Served
Children and youth
People with diseases and illnesses

A confidential space where families can meet, share important information about their experiences and details on their rare disease to help others as well as provide insight to researchers and get them further interested in focusing on rare disease. This program involves setting up learning sessions to where researchers, physicians and the patient community are able to educate each other on data collection, research, rare disease, and other important topics decided upon by the rare disease community.

Population(s) Served
People with diseases and illnesses
Children and youth

This project entails assisting local Undiagnosed group with organizing programs and helping to host on event dates.

Population(s) Served
Families
Children and youth

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of community initiatives in which the organization participates

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, People with diseases and illnesses

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Metric entails initiatives that support and promote policies that are in the best interest of the rare disease community and rare disease awareness.

Number of referrals to resources offered

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

This metric tracks the number of organizations that we do not collaborate on a full program, but help in a few minor activities or interact to connect them to more relevant resources.

Number of new organizations signing on as collaborators

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We consider each individual patient advocacy organization that we actively help to be a collaborator.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

Our organization is passionate about empowering those with rare diseases and their families to understand how they and their Patient Organizations can play an important role in the development of treatments for rare diseases. They can help in the design of the right study, increasing its likelihood of success, as well as expediting the drug development process. As the only nonprofit organization focused predominantly on clinical trial preparation and facilitation, the PROS Foundation seeks to connect with patient advocacy groups and guide them towards readiness for natural history studies or the clinical trial phase.

Our organization's strategy is to partner with rare disease patient advocacy groups, help them assess their advocacy goals regarding preparations for the clinical trial phase and then allocating appropriate actions to help them achieve those goals. We also strive not to duplicate efforts and so partner with other organizations to team up to meet goals that have an over-arching strategy to promote interest and research for rare disease.

Our Staff and volunteer pool have strong backgrounds in clinical trials. The needs of a patient advocacy organization vary so our capabilities include, but are not limited by the following: Develop Registries, Support Registries, Retrospective Chart Review, (Prospective) Natural History Studies, Coordinate Patient Focus Groups, Patient Advocacy Group Website Help, Indication Support Group, Provide data collection feedback, Regulatory Consulting

We have had a productive year so far in that we completed an extensive vendor selection and pinpointed a few offerings that a patient advocacy group can consider when assessing their data housing needs. We have also completed a couple of fundraisers benefiting different patient advocacy groups as well as confirmed over five partnerships and collaborations. Though there have been other smaller accomplishments, our greatest so far has been the bringing about of over fifteen rare disease diagnoses and having a central area for a patient registry.

Financials

Pathways for Rare and Orphan Studies
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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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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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Pathways for Rare and Orphan Studies

Board of directors
as of 02/22/2022
SOURCE: Self-reported by organization
Board chair

Ellen Morgan

Kristi Clark

Jimmy Lin

Maureen McArthur

Trisha Mullins

Ellen Morgan

Organizational demographics

SOURCE: Self-reported; last updated 1/18/2021

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
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability