Rare Disease Community Blueprint:
There are three major national organizations serving the U.S. rare disease advocacy leadership 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 Caregiver Community ( Parents and Parental Guardians)

3. The Care Partner Community (Spouses and other non-parental Guardians)

4. Patient Advocacy Organizations

5. Pharmaceutical/Biotech Companies

6. Insurance Providers

7. Researchers/Scientists

8. Academia

9. Healthcare Providers

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

11. Regulatory Agencies

12. Independent Consultants

These groups of stakeholders are continuously exploring various collaborative initiatives within the rare disease landscape. Patient-centricity tends to be at the core of each discussion that explores unifying efforts. The primary mutual objective shared amongst all stakeholders is to bring safe and effective rare disease treatments and cures to the market. In order to accomplish this mutual objective, all involved stakeholders must work together through mutually beneficial collaborations. Click here to learn more about RAM Collaborations.

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 landscape in order to better inform stakeholders on how to execute successful rare disease patient-focused collaborations. If you are interested in collaborating and/or consulting with the advocacy leaders of the Rare Advocacy Movement, please do not hesitate to Contact Us.

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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, and other rare disease stakeholder 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, all of which have vowed to abide by the Code of Conduct for Membership.

 

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 rare disease leaders and influencers dedicated to the growth and advancement of, not only their own disease specific communities but, the overall rare disease community. RAM welcomes all rare disease focused stakeholders of whom have a genuine understanding, interest and respect for the implementation of human-centric initiatives to complete and submit a RAM Application for membership or a RAM Collaboration Proposal.

 

RAM reserves the right to reject any application(s) and/or proposal(s) for any reason.

 
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The Rare Advocacy Movement (RAM) is a group of patient advocacy professionals dedicated to the overall advancement of the rare disease patient advocacy professional ecosystem and landscape. Membership and participation in RAM is subject to the observance of the established Code of Conduct for Membership ("Code of Conduct") and the acceptance of the established and adopted RAM Process Document. All members and affiliates of RAM vow to abide by the established Code of Conduct. Any RAM member or affiliate who may violate the Code of Conduct in parts and/or in its entirety will be subject to immediate removal from the RAM membership and/or affiliation.