The New Zealand Organisation for Rare Disorders (NZORD) will present the New Zealand Rare Disease Day Awards (RDD Awards) for the first time in 2019. The winner in the Patient Advocacy and Support Award category is Allyson Lock. She has been nominated as a tireless fighter for the Pompe community.

Allyson has spent the past eight years lobbying and supporting patients in New Zealand. She is President of the New Zealand Pompe Network and since her diagnosis has fought to ensure that the cost of treating Pompe with enzyme replacement therapy is covered by the New Zealand health care system.

We congratulate Allyson on the award.

(Photo courtesy of Allyson Lock and the New Zealand Organisation for Rare Disorders, photographed by Levi Gershkowitz of Living In The Light Of Rare Diseases.)

The 2019 IPA calendar is finally out and has been distributed to member associations worldwide. We thank the International Pompe Community that contributed to the creation of a calendar that will keep Pompe in the minds and hearts of all recipients throughout the year. The calendar will give us the opportunity to raise awareness on Pompe disease, for not just a day, but for the whole year of 2019, which marks also the IPA's 20^th anniversary.

The calendar features for each month photos and artworks by the Pompe community, in addition to thought-provoking statements or questions by and for the scientific community.

Thank you,

The International Pompe Association.

Find more

• 2019 IPA Calendar (PDF, 4,04 MB)

The IPA is establishing a Community Advisory Board (CAB) for Pompe disease. A CAB is a group of volunteer patients/advocates who offer their expertise to public or private sponsors of clinical research on overall program development, single clinical trials and other aspects beyond the research program. A CAB advises several sponsors in the same fields and, by doing so, it ensures that research studies are designed to take into account the real needs of patients, resulting in higher quality research.

For this reason, the IPA is looking for, ideally, 15-20 CAB members, representing the range of varieties of Pompe disease (from infantile to late-onset Pompe disease), including parents and patients, spread around the world. Based upon the specific requirements/needs of the sponsor of particolar meetings, it is possible that the entire CAB may not be called upon every time.

Requirements:

• Must be over 18 years old;
• They should have the specific condition for which the CAB is being set up, be a parent of someone living with the disease, or be a member of an organisation dealing with the exact condition;
• They should have good English skills;
• They should be able to commit to a minimum of 2 face-to-face meetings a year (approx. 2 days each), and 2 other e-meetings;
• CAB members should adhere to the Code of Practices Guiding the Relations between Patients’ Organisations and the Healthcare Industry. 

Preferred requirement:

• They should be member of an organisation, not unaffiliated individuals.

Please write a letter stating why you wish to be a CAB member. Please include in the letter how you meet the above requirements and any experience you have that you think the Reviewers should be aware of. If you do not meet one of the requirements above, but believe you should be considered anyway, please explain why. Application letters should be sent to info@worldpompe.org.

The deadline to submit applications is October 31, 2018.

Personal data will be processed only for the purpose of this call for Applicants.