Charter

Our Charter 

 

Worldwide Rare Advocacy Partnership 

 

We are an international partnership of Rare Disease professionals. Our mission is developing greater professional talents, sharing knowledge and providing resources - across the Rare Disease Stakeholder Network. We are passionately focused on being a moral and ethical voice in the Rare Disease advocacy community.

 

 

Code of Ethics 

 

All Partners shall adhere to the following. Violations may result in consequences such as a warning, suspension, expulsion from Worldwide Rare Advocacy Partnership (WRAP), etc. 

 

I. Partners have a positive duty to observe the highest standards of truth, accuracy, and integrity with fellow Partners and professionals, patients, families, the media, colleagues, other organizations, and the public. 

II. Partners shall treat other individuals with dignity and respect, avoiding extravagant claims or unfair comparisons and giving credit for ideas and words borrowed from others. 

 

III. Partners must not engage in any practice nor be seen to conduct themselves in any manner detrimental to the reputation of WRAP or the reputation and interests of the Research and Medical Nonprofit Communities.  

 

1. Partners shall not intentionally damage the professional reputation or practice of another Partner of WRAP.   

2. Partners shall not publicly engage in any discourse with any stakeholders in the rare disease, advocacy or patient communities.  

3. Partners shall behave professionally and with their individual Boards consent and support when handling all negative issues arising with their nonprofits and not behave any way that would reflect badly upon WRAP or the others Partners of WRAP. 

 

IV. Partners shall avoid conflicts of interest. 

 

1. Partners shall not make medical referrals to any specific doctor(s) or facilities over or above providing patient families with information on which hospitals provide care for the congenital anomalies that they work with. 

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2. Partners have a duty to ensure that the actual interest of any organization with which they may be professionally concerned is adequately declared. 

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3. Partners will not disclose confidential information belonging to, or obtained through their WRAP affiliation to any person, including relatives, friends, and business and professional associates, unless WRAP has authorized disclosure. This policy is not intended to prevent disclosure where disclosure is required by law. All Partners are cautioned to demonstrate professionalism, good judgment, and care to avoid unauthorized or inadvertent disclosures of confidential information. Upon separation of a Partner from WRAP, he or she shall return all documents and other materials that may contain confidential information. 

 

VI. Partners must uphold this code and cooperate with fellow Partners in so doing by enforcing decisions on any matter arising from its application. A Partner that knowingly causes or permits a colleague to act in a manner inconsistent with this code is complicit to such action and shall themselves be deemed to be in breach of it. 

 

VII. Partners are required to take all reasonable care that professional duties are conducted in accordance with all requisite laws and without causing offense on the grounds of gender, race, religion, disability or any other form of discrimination or unacceptable reference. 

 

VIII. Partners shall avoid violating rules regarding intellectual property rights, competition, and profit within WRAP and patient communities. 

 

1. The WRAP logo is joint property of current Partners of WRAP and can only be used only by Partners of the partnership or in publications referring to the partnership. 

2. All names, logos, websites, graphics, merchandise, etc. of individual charities within WRAP are their own intellectual properties and should not be used without prior permission from said organization. 

3. Partners agree to respect the artistic rights of individuals and organizations, and agree not to infringe or compete by creating similar intellectual properties. 

4. No persons, organizations or other entities will profit off WRAP, it's logos, events or other work. 

 

IX.  All Partners will follow best practices in regards to patient data.  

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X.  Partner organizations in WRAP will actively contribute to the partnership. 

 

1. Partners are required to attend a minimum of 3 of the virtual quarterly Partners meetings. 

2. Partners will respond to all group e-mails and posts in a professional and timely manner. 

3. Partners will respond to all calls to vote within 10 business days. 

4. Partners will actively participate in collaborations with WRAP and Partners of WRAP as necessary or the opportunities arise to: 

 

1. Participate in global conferences or events that will help to push research forward.  

2. Work with other Partners of WRAP to create and publish peer reviewed while papers. 

3. Encourage, support and mentor fellow Partners of WRAP to be successful individually and collectively and to actively nurture a positive, collaborative environment that will benefit all Partners, stakeholders, patient communities and research.  

 

Partners who fail to follow the guidelines set forth in the charter or who fail to actively participate in the Worldwide Rare Advocacy Partnership, will be voted out as deemed necessary. 

  

 

Purpose and Goals 

 

 

1. Set an example of ethical and professional Patient Advocacy 
2. Support rare disease research 
3. Work together to support and advocate for all patient communities included in WRAP 
4. Jointly support and create research opportunities for as many of our patient populations as possible 
5. Raise awareness worldwide. 
6. Help set standards for new advocates and nonprofits and to mentor new advocates/leaders.
7. Help to bring communities together and work to save larger populations of patients. 

 

 

All Partners must sign this charter, thereby agreeing to follow all rules stated therein. The charter may be amended at any point in time, and Partners will be required to sign any updated versions.