Parent & Professional Delegate Guidelines

 

 

IPWSO members include those countries where there are established PWS Associations who have paid their annual IPWSO dues for the year. Associate members are those countries with no official PWS Association, but who have a group of parents, medical professionals, and/or interested people who have expressed a keen interest in PWS and a desire to be part of the IPWSO community. These latter, informal associations do not hold voting rights at the 3-yearly General Assembly, but are openly welcomed to attend.

 

Delegates from Member Countries should be approved and/or sponsored by their country’s association. Delegates from Associate Member countries are usually volunteers who have connected with IPWSO and agreed to be delegates. Below, you will find a reminder of responsibilities for all delegates:

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IPWSO Parent Delegate

 

In support of IPWSO’s objectives, the Parent Delegate or Delegates, shall have the following responsibilities:

 

Represent IPWSO in a manner consistent with its goals and objectives. This generally involves distribution of communications and information from IPWSO to interested parties within their country and their country’s PWS Association, if there is one.

 

Assist in creating and establishing a national Association in your country if one does not exist.

 

Act as a liaison between the IPWSO and your national Association.

 

Attend the tri-annual IPWSO International Conference and General Assembly and/or exceptional meetings, when feasible, and take responsibility for your country’s vote at the General Assembly.

 

Represent all local and national interests when multiple Associations co­exist.

 

Vote on issues requiring your country’s vote in a timely manner.

 

Represent your country’s Association in bids for the International Conference, as directed by your country Association’s Board of Directors.

 

Promote Regional Conferences in your area.

 

Coordinate with the Professional Delegate and Caregiver Delegate in representing your Association in IPWSO, as needed.

 

Have facilities to communicate with IPWSO and with your country Association by email. 

 

Be able to effectively communicate in English.

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Specific Tasks:

The following specific tasks are important to fulfilling the position as Parent Delegate:

• Submit activity reports to your country’s Association membership on a yearly basis, describing significant activities of IPWSO and your involvement, if any.

• Assure transmission of IPWSO information and newsletters to your country’s Association and members.

• Submit articles to the person responsible for the IPWSO website for inclusion in IPWSO’s electronic newsletter, at least once a year to keep membership generally aware of the activities in your country.  Each country’s Association is responsible for ensuring that IPWSO dues are paid in a timely manner. As Delegate, you may receive reminders from IPWSO to this effect Respond to official e-mail.

 

• Promote general awareness and education of PWS through networking with parents and professionals in your country.

 

Term: The term of Parent Delegate will be three years, but may be decided upon by the delegate's PW Association, or, if the parent is a volunteer delegate, by the parent him/herself.

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Professional Delegate

Each country can select a professional with interest and/or expertise on PWS as a Professional Delegate. A Professional Delegate will be from a medical or scientific field. Each member country’s Professional Delegate will have the following responsibilities:

 

• If possible, attend the General Assembly and share with the Parent Delegate the opportunity to cast your country Association’s voteDistribute information to professionals in your country (through the country’s Association, if appropriate) about the tri-annual International IPWSO Conference, and encourage their submission of abstracts and attendance to the Scientific Conference component.

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• Distribute professional literature sent by the IPWSO office on a regular basis to interested professionals in your country (through the Country’s Association, if appropriate).

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• Serve as an expert resource on PWS to professionals in your countryTerm: The term of Professional Delegate will be three years with the possibility of a second term.

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IPWSO Caregiver Delegate:

Caregiver delegates are individuals who provide individual or professional services to people with PWS but who are not physicians or parents, such as direct caregivers, physical or occupational therapists, teachers, etc. The country’s caregiver delegate is appointed by their PWS Association. The IPWSO statutes do not yet extend voting rights at the General Assembly to caregiver delegates, but are encouraged to attend and participate.

 

• To function as a point person for communication between the Professional Provider Caregiver Board (PPCB) and the professional providers and caregivers in their country

• To collaborate with the IPWSO Parent and Professional Delegates in their country concerning services available for PWS;

• To obtain information (when possible and with appropriate permission) about the demographics of the people with PWS served in their country and send this back to the PPCB, including the services available for people with PWS in the country for inclusion on the World Map:

  • what kind of living situations they have, e.g., living at home, living with a residential provider, or living in some other option like shared living with a family NOT their own?

  • what kind of work they have?

  • what kind of medical support they have, i.e., is there a multidisciplinary team for PWS?

  • what kind of education is available for the children and young adults with PWS?

• To identify concerns about residential living, work or other topics pertinent to PWS in their country, and to bring this information to the PPCB for consideration.

 

This information may lead to topics for future Caregiver Conferences, and the Caregiver Delegates will have an opportunity to take an active role in these conferences.)

 

• To describe successful projects or programs that could become models for other countries to emulate.

• To identify parents, professionals or caregivers from their country who have been instrumental in changing the lives of people with .

• To attend the IPWSO meetings and Caregivers Conferences (to be funded by the country’s organization) so Caregiver Delegates will have the opportunity to meet others and decide for themselves some sense of direction for their group under the leadership of the PPCB. (Ultimately, some of these caregiver delegates will have the potential to be nominated and elected to become the successors of the current PPCB members.);

• To access resources in IPWSO or elsewhere for translation of information into their country's language and to make this information available and understandable for all who need it.