January 2020 Issue

How to start a local glaucoma patient support group

Many areas and countries in the world do not have patient support groups but sorely need them. Patient mutual support focused on empathy and compassion is not less essential than qualified medical treatment by glaucoma experts.

WGPC of WGA is here to help you to organize and run glaucoma patient support group at your locality. If you have a desire to help other people cope with their glaucoma and are ready to get involved:

  • Search the WGPC Directory or on the Internet for a glaucoma support group that you can join at your locality.
  • If such a local group does not exist, discuss with your health practitioner or head of a local hospital how to start a glaucoma patient organization at your city, province or country. Experience shows that organizing and running a viable patient support group needs strong organizational and information support. One source of support is from a local ophthalmologist or an eye clinic at the local hospital.
  • Find glaucoma support groups around the world in the WGPC Directory. You can make contact to suitable support group based on common location, familiar language or because information on the group’s Web site appeals to you. Ask their leaders for advice on starting an effective patient support group. Learn from them.
  • Ask your health practitioner or the head of a local hospital for their help and referrals to their professional associations and government health departments, or to advertise your support group among their glaucoma patients at your city, province or country.
  • If you have started a glaucoma patient organization please provide the WGPC with the information to be included to our growing database.
  • Volunteer for WGPC! By networking with experienced patient support leaders from around the globe, you could find what makes a group effective and useful.
  • For Internet sites and books on services useful to patient support groups, see also Patient Resources on WGPC Web site.


Looking for volunteers to participate at WGPC activities!

  • WGPC would like to expand the member/association information interchange, while continuing to operate with a small volunteer network.
  • We would also like to engage glaucoma patients and experts, member of their families and friends. Please join us to help our stakeholder community to deal with this debilitating disease.
  • We would much like to reach the younger generation, especially children, grandchildren and siblings of glaucoma patients to support their relatives and friends with glaucoma. Encourage them to check their own vision regularly as, according to the scientific research results, family members’ risk of getting glaucoma increases ten-fold compared to people who do not have close relatives with this debilitating disease. In our experience, engaging the youth is not trivial. But we do need to do it proactively and, without delay, involving as many young committed people as we can in WGPC activities.
  • We would much appreciate if you, our readers, re-send this Call for Volunteers to the editors of newsletters, blogs, web sites, or membership managers of all the societies; associations; college departments and hospitals; as well as city, state or hospital patient support groups that you might know of. You may also send to prominent health practitioners and experts that might deal with glaucoma, ophthalmology, optometry, visual health and related issues, at your locality or anywhere around the globe.
  • Any advice on how we can reach potential volunteers interested in glaucoma subjects, especially in developing countries, would be much appreciated.

In particular, we are looking for passionate and proactive volunteers with the following competencies:

  • Recent graduates or students who understand and could represent the mentality of the younger generation and would be social networking-savvy.
  • Journalists, technical writers, editors, media content managers that would help us to further develop our Web site and issue periodic electronic newsletters (aiming for quarterly) to support the above listed goals. They would help to manage the newsletter content.
  • Blogger. We are looking for an experienced blogger with the strong focus on glaucoma patient’s lifestyle and health; as well as member associations’ issues.

We are looking for competencies and abilities to use simple language, and understanding of streamlining graphic interface. Some knowledge of HTML, Web technology and programming would be desirable. The website should be able to support automatic translation to local languages in real time.

Most of the content would be provided by member associations, patients and glaucoma experts, with open subscription and occasional mailing campaigns for essential fundraising and dynamic interaction with various stakeholder communities. It should look professional and be kept secure.

Volunteer for WGPC!



Thanks to the World Glaucoma Association for sponsoring WGPC newsletter! Our special gratitude to Irene Koomans, WGA Executive General Manager, for her help with producing the newsletter.


Thanks to the The Glaucoma Foundation for sponsoring WGPC newsletter! Our special thanks to Elena Sturman, TGF President and CEO, and to Cly Fowkes for their help with producing the graphic design for this issue of our newsletter.


Thanks to the Glaucoma Research Foundation for sponsoring WGPC newsletter. Our special thanks to Thomas M. Brunner, GRF President and CEO, and to Andrew Jackson, Director of Communications, for their help with producing this issue of our newsletter.


Thanks to Dr. Kris Rampersad, Independent Educator, Journalist, Researcher, Publisher, Producer, for her editorial support in producing this issue of our newsletter.


This newsletter is issued by the World Glaucoma Patient Committee (WGPC), a division of the World Glaucoma Association, which is an independent, impartial, ethical, global organization for glaucoma science and care. WGPC’s mission is to better the lives of glaucoma patients by encouraging the establishment of and cooperation among glaucoma patient organizations worldwide.


Volunteer for WGPC! Your participation could make a difference for glaucoma patients worldwide, especially in developing countries and disadvantaged communities.
Write to us! Share your patient support experience, stories and newsletter/Web site publications with the worldwide community of patient associations and support group.
©2020 World Glaucoma Association



WGPC is looking for a volunteer newsletter editor

We are looking for volunteers to edit WGPC Newsletter. Top level English editorial skills are essential. Ability to use simple language and streamlined graphic interface is vital, as WGPC website with newsletter archives should be able to support automatic translation to local languages in real time.

 

WGPC Newsletter

WGPC Newsletter will be issued periodically, preferably monthly but at least quarterly. Most of the content would be provided by member associations, patients and glaucoma experts, with open subscription and occasional mailing campaigns for essential fundraising and dynamic interaction with various stakeholder communities. It should look professional and be always kept secure.

We encourage all glaucoma patients, health practitioners, biomedical and high-tech researchers, and other experts to send us your articles, letters and submissions using Contact Us form on this Web site. WGPC does not guaranty publishing of all submissions but we promise to consider them all.

WGPC asks worldwide member patient organizations to provide us with the most interesting materials that they have already published on their Web sites or in their own newsletters and blogs. We will re-publish your materials in our newsletter on a rotating basis to the benefit of global glaucoma patients.

 

Write articles for WGPC Newsletter!

Consider writing new articles especially for WGPC newsletter. Desirable format is a page of text and one or two photos. Primary readers – heads of glaucoma patient support groups around the world, MDs that help to sponsor such groups, esp. in the developing countries.

Ideal subjects are not about glaucoma but mostly about your organizational experience (each bullet below could be a separate article for future issues):

  • Your patient support group brief history, and experience in facilitating patients’ interaction and facilitation of group’s activities by sponsoring health practitioners
  • Examples of your support group activities, including typical meetings, critical importance of empathy within the peer group, in addition to glaucoma information and education typically provided by health practitioners
  • Whether you have a Web site – how it helps you in your mission
  • How to organize a local support group, importance of involvement of a hospital or MD sponsor, etc.
  • We are especially interested in experience of patient support groups in developing countries
  • Advice on obtaining funding for local support groups
  • Review of materials useful to patients (books, articles, films, etc)