From JD Faccinetti, Co-founder, Chairman, and CEO – This year we participated in the World Alliance of Pituitary Organizations – WAPO 2018 – conference held recently in Venice, Italy. I’m happy to report on several initiatives. Our partnership with WAPO is incredibly vital to our effort to increase awareness and knowledge of pituitary disease. Thirty-one pituitary organizations from 20 different countries were present at this year’s gathering. The group tackled essential issues ranging from the creation of centers of excellence to the focus of multidisciplinary teams to the needs of countries dealing with the introduction of substandard drugs.
We met beautiful, smart, dedicated people and discussed important ideas, several of which are presently under development. One of the key initiatives, stemming from these talks, is the creation of a WAPO-PWN section in the Pituitary World News website with news from around the world where WAPO members and others can share knowledge, ideas, and best practices to support country-specific advocacy efforts for the benefit of pituitary patients. Key subject areas included early diagnosis, support in the primary care area, access to drugs and quality of life issues.
Spanish Edition
In another important initiative, PWN is working with WAPO members from Spain and Latin America, including Argentina, Chile, Colombia, Peru, Ecuador, Uruguay, and others, on a Spanish edition for the web magazine and blog. We intend to publish new content, relevant articles, and existing PWN articles in Spanish. We are thrilled to have the opportunity to offer this support to our Spanish speaking audience around the globe. More to come on this subject.
We hope that in the not too distant future, we will be able to publish PWN in Chinese and Russian as well as many other languages to make this critical knowledge and information available in all corners of the world.
Stay tuned for more developments!
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“Key subject areas included early diagnosis, support in the primary care area, access to drugs and quality of life issues.” Thank you for helping to bring increased awareness and early diagnosis to pituitary disease. So many continue to suffer and have no idea why.
Emphasize to all treating physicians the importance of replacing growth hormone in adults, in particular- women. Endos who let gyns replace women’s hormones must keep tabs and make sure all hormones are replaced and in therapeutic levels. The default setting for women is not ahormonal. Both of the above areas have been horribly neglected by my endocrinologists. Yes, there is some paperwork in getting patients growth hormone, but it is not a huge barrier. Gh treatment is not an option for gh deficient adults- It is a routine standard of care