Recognizing the 15th Anniversary of the International Pompe Association (IPA) with IPA Chair, Tiffany House

Jamie Ring | January 27, 2015

This year, the International Pompe Association (IPA), celebrated its 15th Anniversary. Tiffany House was recently elected to be the Chair of the organization after serving on the board for a number of years. In recognition of IPA’s 15th anniversary and Tiffany’s new role, we wanted to take a look back at some of IPA’s past accomplishments and their goals for the next several years through an interview with Tiffany. Congratulations to the IPA on all of their great work benefitting the global Pompe community!

  Interview with Tiffany House

Q. What made you decide to become more active in global advocacy work?

The importance of global patient advocacy really can’t be understated. While each country (and even province, state, city, and community) has unique challenges and situations to face, there are more commonalities than differences. Access to treatment, patient and physician education, and increasing disease awareness (among others) are topics and issues that affect every Pompe patient around the world.— Tiffany House, Chair, IPA Board of Directors

A. Patient advocacy in general is something I have been passionate about for many years. I was diagnosed with Pompe at the age of 12, and my first experiences with patient advocacy came from watching my parents form the Acid Maltase Deficiency Association (AMDA) shortly thereafter.  Even though I was young, I would help with some of the work as my health permitted. Watching my parents work so hard to advocate for Pompe patients all over the United States and around the world was an inspiration to me and they encouraged me to become more active in patient advocacy as I became older. The AMDA was one of the founding members of the International Pompe Association (IPA) in 1999, and I was able to observe how important global patient advocacy is from a front row seat. Over the last fifteen years I have seen the direct impact that a unified, international patient advocacy voice can have for patients. 

The importance of global patient advocacy really can’t be understated. While each country (and even province, state, city, and community) has unique challenges and situations to face, there are more commonalities than differences. Access to treatment, patient and physician education, and increasing disease awareness (among many others) are topics and issues that affect every Pompe patient around the world. So I was honored when I was asked to join the IPA as a Board Member in 2006, and then chosen to become Vice-Chair in 2011 and Chair in 2014. I think that the work that the IPA does to unite the international Pompe community is incredibly important and I am excited to be in a position to support its work.

Q. When you look back on the past 15 years, in your opinion what has been the biggest accomplishment to date for the IPA?

A. This is a very difficult question to answer. There are so many initiatives and activities that the IPA has been involved in over the last 15 years that I think are important. If I have to choose just one, I would have to say our partnership with Erasmus University Medical Center (Rotterdam, the Netherlands) on the IPA/Erasmus MC Pompe Survey. 

The IPA/Erasmus MC Pompe Survey was started in 2002 and it is an ongoing international study in which data is collected from children and adults with Pompe disease by means of self-report questionnaires. The goal of this survey is to gather as much information as possible on the natural course of the disease, the severity of the disease in the patient population, and the impact on the daily life of the patients. The continuous data collection of over 400 patients has allowed researchers to describe the natural course of late-onset Pompe disease as well as the alterations brought about by ERT. The international character of the survey allows access to a large cohort of patients, which makes it possible to draw conclusions on a group level.

This survey is unique in that the patient is able to directly report on his or her current condition. I am very proud of the fact that the IPA is a partner in this important scientific research—research that gives Pompe patients a direct voice in how Pompe affects them. Importantly, several papers have been published in medical journals over the years as well based on the data from the IPA/Erasmus MC Pompe Survey.

Q. As the incoming President of the IPA, what are your priorities for the organization in the next few years?

A. One of my priorities is to look towards the future. In addition to providing support and resources to the current Pompe Community, I believe it is the IPA’s responsibility to serve the future needs as well. One important way that we will do this is by initiating a mentoring program for young adults that are interested in becoming involved in international patient advocacy. This program is called the “Pompe (Em)Power Program” and I am excited that the Pilot Phase of this Program was selected as a recipient of Genzyme’s 4th Annual PAL Award.

Another priority I have is to continue to reach out to patient organizations and contacts around the world to grow our international support capabilities. The larger our network is, the better we will be able to support all Pompe patients around the world. This includes providing more resources and support to existing Affiliate Members and Contacts through regular Program Updates and the initiation of the IPA’s Patient Leaders’ Closed Forum, as well as actively recruiting contacts in new countries.

Q. What advice would you give to someone who was thinking about establishing a new patient organization or taking a leadership role in one?

A. I think the first thing you have to do is be passionate about helping and volunteering. It can be difficult at times–if you are a patient or family member of a patient then the reality is that you will have other demands on your time and energy. With that said, supporting your community (in my experience) is a truly rewarding experience. The passion and conviction you have to help others can and will get you through the challenging times.

I would also advise you to form partnerships and alliances with others who share your goals. It is not important that you agree on every issue–in fact it has been my experience that it is important to surround yourself with those that challenge you and help you to see different perspectives. Instead, you need to have common goals that unite you, and the ability to have open debate and discussion. I have learned through my work with the IPA and the IPA Board and Advisors that “Together We Are Strong”–the motto of International Pompe Day.

Finally, I would advise that you make connections with those in the scientific community who are open to working closely with patients and patient organizations. In my experience this is vital, as these advisors can provide support and guidance when it comes to basic disease understanding, treatment options, disease management guidance, and helping you to understand the current state of the art of research into your disease.

Q. What are some examples of initiatives or programs IPA has implemented that you feel have been most successful?

A. One of the programs that I am most proud of is the IPA’s Pompe Connections. The Pompe Connections (and also the Pompe Connections: Treatment Edition) are a series of educational brochures for patients, their families, and physicians. They cover a variety of topics and are available in multiple languages. These brochures are available on the IPA website (www.worldpompe.org) and we are in the process of adding new brochures and translations.

I am also proud of our recent initiative: International Pompe Day. The IPA worked with the international Pompe patient community to organize this international day of awareness. The first annual International Pompe Day was held on April 15, 2014 and it was a huge success. Patient organizations, individuals, physicians, and industry partners from all over the world participated in recognizing and celebrating our community and raising awareness of Pompe disease. More information on International Pompe Day and a summary of the activities are available on the IPA website.

Another priority I have is to continue to reach out to patient organizations and contacts around the world to grow our international support capabilities. The larger our network is, the better we will be able to support all Pompe patients around the world. This includes providing more resources and support to existing Affiliate Members and Contacts through regular Program Updates and the initiation of the IPA’s Patient Leaders’ Closed Forum, as well as actively recruiting contacts in new countries.— Tiffany House, Chair, IPA Board of Directors

Q. If a patient group leader is reading this and would like to connect with the IPA, what is the best way for them to do so?

A. They can contact me at TiffanyLHouse@aol.com or they can send a message through our website at www.worldpompe.org.

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