Just around a month ago, the National Organization for Rare Disorders (NORD) offered a webinar on how to create a patient registry or start a nonprofit organization. NORD’s webinar, part of its RareLaunch program, discussed some of the measures that can benefit those in the rare disease community. While Patient Worthy will go over some of the lessons from the webinar below, you can also watch the full webinar here.

NORD

The National Organization for Rare Disorders (NORD) describes itself as:

a 501(c)(3) organization, [and] a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

NORD has been working with patients, their families, and other organizations for over 30 years.

RareLaunch

Designed by NORD, RareLaunch program:

provides education, training and support for patients to start nonprofits; for those involved in nonprofits, the program also builds capacity and implements good governance practices to ensure their development is sustainable.

Throughout RareLaunch, the organization will discuss topics such as:

• How to establish a 501(c)(3) nonprofit organization
• Strategies to develop and utilize social media to raise awareness
• Training and mentoring for organizational leaders
• Recruitment resources
• How to connect to patients, caregivers, community members, and other organizations

Interested in getting involved in the NORD RareLaunch program? Register here for the Forming a Foundation Workshop on December 2, 2020. You can also register here for the Research Ready Workshop on December 3, 2020.

NORD Webinar Insights

Community Engagement

One extremely important aspect of forming a nonprofit organization is community engagement, the webinar shares. Typically, when people begin their journey to starting a 501(c)(3), they hyper-focus on the business aspects. But this can throw off the entire mission, says Colleen Brunetti of the Pulmonary Hypertension Association (PHA). Instead, those beginning a nonprofit should focus on their “why” – what mission drives you? Who do you want to help? Who or what inspired you? Answering these questions will ground your mission in something solid.

For example, PHA began when a group of women with pulmonary hypertension wanted to learn more about their condition. Eventually, they created a medical board, launched a conference series, and contributed to the first genetic discovery around pulmonary hypertension. But as Brunetti shares, the organization also focuses on community engagement, talent building, and collaboration to come up with new ideas.

501(c)(3)

One big part of the NORD webinar was discussing 501(c)(3) status. But what does it mean to be a 501(c)(3) nonprofit organization? Foundation Group, Inc. describes it simply:

Being “501(c)(3)” means that a particular nonprofit organization has been approved by the Internal Revenue Service as a tax-exempt, charitable organization. “Charitable” is broadly defined as being established for purposes that are religious, educational, charitable, scientific, literary, testing for public safety, fostering of national or international amateur sports, or prevention of cruelty to animals and children.

Receiving 501(c)(3) status offers organizations legitimacy, transparency, community connection, and tax incentives. Additionally, it builds a framework through which the organization can begin fundraising. Finally, 501(c)(3) status creates an easier platform for future research.

Developing Patient Registries

A patient registry helps collect patient data and give more insight into disease progression or trends, symptoms, treatments, and other related information. This data can then be used to inform future research or connect patients to clinical trials. For example, the Global PWS Registry, which has been operating for 5 years, captures data from patients with Prader-Willi syndrome; the registry is described as:

a powerful tool for the PWS community to advance understanding of PWS, areas of unmet need, standards of care, and new therapies.

From using this registry for research, or providing data to sponsors for natural history studies, the Global PWS Registry offers immense benefit for patients and researchers alike. While developing a nonprofit organization, considering a patient registry is also a helpful step.

Read the source article here.