Become a member
Who can be a full IMPSN member?
Full membership with voting rights in the International MPS Network (IMPSN) is designed to empower patient advocacy and support organizations that represent and prioritize individuals living with MPS and related lysosomal storage diseases (LSDs).
To qualify, organizations must meet the following criteria:
National or Regional Representation
- Must be the nationally recognized Patient Advocacy/Support Organization in their country or region.
- Demonstrates a clear mandate to support patients with MPS and related LSDs.
Patient-Driven Leadership
The organization must be patient-driven, meaning:
- Patients, relatives, or caregivers actively serve on the Governing Board.
- Alternatively, the majority of voting members are patients or their family members.
Focus on MPS and Related LSDs
The organization must prioritize:
- MPS and related lysosomal storage diseases in its activities, resources, and advocacy.
- Supporting the rights, well-being, and inclusion of Persons Living with MPS and related LSDs.
Non-Profit and Non-Governmental Organization
- Must be the nationally recognized Patient Advocacy/Support Organization in their country or region.
Registered Legal Entity
- Must be a legally registered organization in its country or region.
Proven Activity and Credibility
- Demonstrates ongoing activity and leadership as a collective or umbrella organization representing the needs of individuals with MPS and related LSDs.
- Must have a track record of advocacy, support, or community-building initiatives.
Emerging Advocacy Organization
- If a nonprofit or charity is not yet established in your country or region, we encourage you to reach out to IMPSN to discuss membership options and explore how we can support your advocacy efforts.
By meeting these criteria, your organization becomes part of a global network dedicated to advancing the care, support, and advocacy for those impacted by MPS and related lysosomal storage diseases.
Full IMPSN Members gain the right to vote and shape the strategic direction of the network, ensuring a unified and patient-centered approach.
FAQ's
Who can become a full member of the IMPSN?
Full membership is open to patient advocacy and support organizations that represent and prioritize individuals living with MPS and related lysosomal storage diseases (LSDs). These organizations must demonstrate a commitment to advancing care, support, and advocacy for the MPS community.
What are the criteria for full membership?
To qualify for full membership, organizations must meet the following criteria:
- National or Regional Representation: The organization operates at a national or regional level.
- Patient-Driven Leadership: The organization is governed by individuals directly impacted by MPS or related LSDs, such as patients, caregivers, or family members.
- Focus on MPS and Related LSDs: The organization’s primary mission supports individuals affected by MPS and related lysosomal storage diseases.
- Non-Profit and Non-Governmental: The organization must be a registered non-profit and independent of government control.
- Registered Legal Entity: The organization must hold official legal registration in its country or region.
- Proven Activity and Credibility: The organization has a demonstrated track record of programs, services, or advocacy supporting the MPS community.
- Emerging Advocacy Organizations: Emerging groups that meet these criteria and are developing their capacity to advocate and support the MPS community are also encouraged to apply.
What are the benefits of being a full member?
Full IMPSN Members gain:
- Voting Rights: The ability to vote at the Annual Meeting of the Members and help shape the strategic direction of the IMPSN.
- Global Representation: A voice in the international MPS community, ensuring patient and family needs are at the heart of IMPSN’s priorities.
- Collaboration & Networking: Connection to a global network of patient groups, healthcare providers, researchers, and industry leaders.
- Access to Resources: Priority access to IMPSN’s resource repository, newsletters, research updates, and multilingual educational materials.
- Participation in Initiatives: Opportunities to collaborate in advocacy campaigns, research initiatives, and global events.
How do I apply for full membership?
If your organization meets the criteria, you can apply by completing the IMPSN Full Membership Application Formavailable [here]. Applications will be reviewed by the IMPSN Board of Directors, and you will be notified once a decision is made.
Is there a fee to become a full member?
No. There is no fee to become a Full Member of the IMPSN. This membership is intended to empower and include patient organizations worldwide, regardless of financial capacity.
What responsibilities come with full membership?
Full Members are expected to:
- Actively participate in IMPSN activities, meetings, and decision-making processes.
- Uphold IMPSN’s mission, values, and patient-centered approach.
- Collaborate with other members and partners to advance the care and well-being of those affected by MPS and related LSDs.
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