Rare Disease Community SNAPSHOT:
There are several organizations serving the rare disease patient advocacy landscape, of which the top are:

1. National Organization for Rare Disorders (NORD)

2. Global Genes

3. EveryLife Foundation for Rare Diseases

4. Genetic Alliance

These organizations offer great resources and host a variety of events that serve to bring all 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 rare disease focused stakeholders is to bring safe and effective rare disease treatments and cures to the market. In order to accomplish this mutual objective, all stakeholders need to work together through mutually beneficial collaborations. RAM is dedicated to maintaining a safe environment where all stakeholders have the opportunity to get to know and vet each other for the sake of collaborating. 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, and often rapidly evolving, 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 is to serve as a community managed Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease landscape. 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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What is RAM?

RAM is a community-managed network comprised of dedicated rare disease advocacy experts who support the effort to understand the evolving rare disease advocacy landscape from the chronically rare person, caregiver/care partner, sibling, offspring communities, and other rare disease stakeholder perspectives. 

 

RAM represents the pulse of the rare disease patient advocacy leadership. 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, each member of RAM 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 an equitable person-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 experts 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 person-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 patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM serves as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. The RAM membership is comprised of a network of patient advocacy professionals that have vowed to abide by the established Code of Conduct for Membership.