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Rare Disease Community Blueprint:
There are three national organizations dedicated to the U.S. rare advocacy landscape:

1. National Organization for Rare Disorders (NORD)

2. Global Genes

3. EveryLife Foundation for Rare Diseases

These three organizations offer great resources and host a variety of events that serve to bring all of the rare disease stakeholders together for collaborative purposes.

The rare disease network of stakeholders includes: 

1. The Patient Community

2. The Care Partner Community ( Parents and Non-Parents)

3. Patient Advocacy Organizations

4. Pharmaceutical/Biotech Companies

5. Insurance Providers

6. Researchers/Scientists

7. Academia

8. Healthcare Providers

9. Service Providers (i.e. research organizations, specialty pharmacies, etc.)

10. Regulatory Agencies

11. Independent Consultants

These groups of stakeholders are continuously exploring various collaborative initiatives within the rare disease landscape. Patient-centricity is at the core of each discussion that discusses unifying efforts. The primary mutual objective amongst all stakeholders is to bring safe and effective rare disease treatments and cures to the market. 

Why is it so important to understand and identify the groups that make up the rare disease network of stakeholders?

It is important to understand which stakeholder group you are working with. While there may be shared goals amongst stakeholders, each group consist of varying perspectives, agendas, and motivations.

 

At times, different agendas may not align and conflicts of interests may arise. Because each stakeholder's perspective is unique and not always understood by members of other stakeholder groups, when collaborating a member from each stakeholder group must be actively present for working groups to truly be effective. 

 

RAM has been developed to serve as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. If you are interested in collaborating and/or consulting with the advocacy leaders of the Rare Advocacy Movement, Contact Us.

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memberS
of
Ram

What is RAM?

RAM is comprised of dedicated rare disease advocacy leaders who support the effort to understand the evolving rare disease advocacy landscape from the patient, caregiver, sibling, offspring community perspectives. 

 

RAM is comprised of community mentors, fresh opinion leaders, and trusted members of industry who believe in the power of collaboration and empowering the development of the patient advocacy industry.

 

RAM members are uniquely positioned to utilize years of experience to identify mutually beneficial solutions amongst the various interests and agendas that exist throughout the network of stakeholders within the rare disease space. 

RAM welcomes all stakeholders who have a genuine understanding and respect for the concept of patient-centric initiatives to generate and support a truly human-focused culture within their respective organizations, companies and overall network.

 

Connect with us to discuss potential collaborative launches of community-focused projects within your organization.

InteresteD in being considered for RAM?

RAM is a network of rareLeaders dedicated to the growth and advancement of, not only their own disease specific communities but, the overall rare disease community. RAM welcomes all types of stakeholders, active in the rare disease space, who have a genuine understanding, interest and respect for the implementation of patient-centric initiatives to complete and submit a RAM Application.

 

Rachelle Dixon is the Membership Liaison for RAM and will be in touch regarding next steps once an application is received. RAM reserves the right to reject an application for any reason.