It is the policy of the International Pompe Association (IPA), as Data Controller, to protect the security and confidentiality of the Personal Data of members, donors, participants, or other third parties (Data Subjects) the IPA engages with, in compliance with the General Data Protection Regulation (EU) 2016/679 (GDPR).
We advise you to read this Policy and keep a copy for your own reference.
- Data Controller
The organization responsible for processing personal information is: International Pompe Association (IPA)
Lt. Generaal van Heutzlaan 6, 3743 JN Baarn, The Netherlands
- What information do we collect and for which purpose
2.1 As part of your membership, the following (personal) data will be processed:
a. Your name and the name of the organization
b. Your full address
c. Your phone number
d. Your email address
e. Your bank details (if paying membership or donator)
2.2 The IPA will use this information mentioned in sub 2.1 for the following purposes:
A. your name, address, phone number and email address will be used for contacting you about your membership, how to terminate your membership, give you the information you asked for and to process the received information from you;
B. your name, address, phone number and email address will be used to provide you invitations, information about our services, products , activities or questionnaires;
C. your name and bank details will be used for payments like membership fee;
D. the IPA will use your name and email address to send you the periodical newsletter with information about our activities, services and other interesting information for the members, unless you explicitly inform us that you do not want to receive the newsletter. If you do not want to receive email s from us, or do not want us to share your information, or if you want to withdraw your consent, you can email us to email@example.com;
E. The IPA will list your name, the name of your organization, the email address and phone number on the IPA website under the Members section;
2.3 The IPA can anonymous combine the contact information and use this for research purposes so we can optimize our services. This information will never be reduced to an individual person.
- How long your information is kept
3.1 The IPA keeps your personal information only for as long as required to operate the service in accordance with legal requirements and according rules. Where your information is not longer required, we will ensure it is disposed of in a secure manner.
- Security measures
4.1 To protect your personal information the IPA took appropriate technical and organizational measures. This way your personal information will be protected against illegal use and against unintentional loss, destruction or damage.
4.2 We work with an authorised contractor, who works only in assignment of the IPA. This contractor is obliged to fulfill all the obligations from the Law on protection personal information and this policy.
- Your rights to your information
5.1 You can always request the IPA to show you your personal information, to change it or ask to delete the information.
5.2 The IPA will deal with your request within a month, unless there are legal reasons to keep the information.
5.3 When you have a complain about the way the IPA treated your request, you can contact the IPA first and when this is not satisfying you can always contact the Dutch Data Protection Authority at www.autoriteitpersoonsgegevens.nl.
5.4 For all requests, complains, questions or remarks about this policy you can contact the IPA at www.worldpompe.org.
- Changes to this policy
6.1 This policy may change from time to time. If we make any significant changes in the way we process your personal information, we will publicise these changes clearly or contact your directly with more information.
We're currently updating our list of members and contacts. Please send an e-mail to firstname.lastname@example.org for contact requests.
List of countries and patient organizations
Personal contact data are not displayed for privacy reasons.
- Algeria: Association Shifa des Maladies NeuroMusculaires (ASMNM) - http://shifadz.wix.com/asso
- Argentina: Asociación de Pacientes de Enfermedades Lisosomales de la Republica Argentina (APELRA) - http://web.apelra.org.ar
- Australia: Australian Pompe Association (APA) - http://australianpompe.org.au/
- Austria: Selbsthilfeorganisation Morbus Pompe Österreich - www.morbus-pompe.at/
- Belgium: Belgische Organisatie voor kinderen en volwassenen met een stofwisselingsziekte (BOKS) - www.boks.be
- Belgium: Vlaamse Vereniging Neuromusculaire Aandoeningen (NEMA) - www.nema.be
- Brasil: APMPS - Doencas Raras - www.apmps.org.br
- Bulgaria: National Alliance of People with Rare Diseases - www.rarebg.org
- Canada: Canadian Association of Pompe - www.pompecanada.com
- Chile: Fundación Chilena de Pacientes de Enfermedades Lisosomales (FELCH) - www.felch.cl
- Colombia: Asociación Colombiana de Pacientes con Enfermedades de Depósito Liposomal (ACOPEL) - www.acopel.org/web
- Croatia: Hrvatski Savez za rijetke bolesti - www.rijetke-bolesti.hr
- Czech Republic: Asociace muskulárních dystofikù v ÈR - www.amd-mda.cz
- Ecuador: Fundación Ecuatoriana de Pacientes con Enfermedades de Depósito Lisosomal (FEPEL DASHA) - www.fepeldasha.org
- France: Association Francophone Glycogenose (AFG) - www.glycogenoses.org
- Germany: Selbsthilfegruppe Glykogenose Deutschland e.V. - www.glykogenose.de
- Germany: Pompe Deutschland e.V. - www.mpompe.de
- Greece: Greek Lysosomal Diseases Association - http://greeklysosomal.blogspot.com/
- Hong Kong: Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group - www.hk-mps.com
- India: LSD Support Society (LSDSS) - www.lsdss.org
- India: Organisation for Rare Diseases India (ORDI) - http://ordindia.org/
- Italy: Associazione Italiana Glicogenosi (AIG) - www.aig-aig.it
- Japan: Pompe House - http://pompe-house.com
- Macedonia FYR: Association for citizens for rare diseases LIFE WITH CHALLENGES - http://challenges.mk/
- Malaysia: Malaysia Lysosomal Diseases Association - www.mymlda.com
- Mexico: Pide Un Deseo - http://iap.pideundeseo.org
- Netherlands: Spierziekten Nederland - www.spierziekten.nl
- New Zealand: New Zealand Pompe Network - https://nzpompenetwork.weebly.com/
- Norway: Foreningen for Muskelsyke - www.ffm.no
- Peru: Asociacion de Distrofia Muscular del Peru - http://admperu.cjb.net
- Philippines: Philippine Society for Orphan Disorders (PSOD) - www.psod.org.ph
- Poland: Rare Disease Organisation Poland - www.rzadkiechoroby.pl
- Portugal: Raríssimas - Associação Nacional de Deficiências Mentais e Raras - www.linharara.pt
- Portugal: Portuguese Association of Neuromuscular Diseases - http://apn.pt/apn
- Romania: Alianța Națională pentru Boli Rare din România - www.bolirareromania.ro
- Russia: Interregional Non-government charitable invalid organisation <union of patients with rare diseases and patients' organisations dealing with rare diseases> - www.spiporz.ru
- Russia: Russian Association for Rare Diseases (RARD) - www.rare-diseases.ru
- Serbia: National Organisation for Rare Diseases of Serbia (NORBS) - www.norbs.rs
- Singapore: Rare Disorders Society (Singapore) - www.rdss.org.sg
- Slovenia: Drustvo Distrofikov Slovenije - www.drustvo-distrofikov.si
- South Africa: Rare Disease Society of South Africa - http://rarediseases.co.za
- South Africa: Pompe South Africa - www.pompesa.co.za
- South Korea: Korea Pompe Disease Society (KPDS) - www.kpds.kr/
- Spain: Asociacion Espanola de Enfermos de Glucogenosis (AEEG) - www.glucogenosis.org
- Spain: Asociación Española de Enfermos de Pompe (AEEP) - http://www.asociaciondepompe.
- Switzerland: Selbsthilfegruppe M. Pompe Schweiz - www.mpompe.ch/
- Taiwan: Taiwan Foundation for Rare Disorders - www.tfrd.org.tw
- Thailand: Genetic LSD Foundation Thailand - www.lsdthailand.org
- Turkey: MPS LH Derneğι - www.mpsturk.com
- Ukraine: Kharkiv Charitable Foundation Children with spinal muscular atrophy - www.csma.org.ua
- United Kingdom: Association for Glycogen Storage Disease (UK) (AGSD-UK) - www.agsd.org.uk/
- United States: Acid Maltase Deficiency Association (AMDA) - http://amda-pompe.org/
- United States: United Pompe Foundation (UPF) - www.unitedpompe.com/
- Uruguay: Asociacion Uruguaya De Pacientes Con Enfermedades Lisosomales (AUPEL) - www.aupeluruguay.com
For Immediate Release
July 4, 2016
As the International Pompe Association (IPA) has previously announced, on Thursday, June 9th, Biomarin Pharmaceuticals stated it was planning to out‐license the further development of BMN‐701 during Goldman Sachs 37th Annual Global Healthcare Conference. BMN‐701 (also known as Reveglucosidase alfa) is an investigational enzyme replacement therapy for Pompe disease that is currently in Phase II/III trials. The IPA was disappointed to learn of this development, but remained hopeful for the continuation of the program.
Unfortunately, this announcement was followed by a Community Update from Biomarin on Wednesday, June 22nd that announced that Biomarin was discontinuing “the clinical development of the BMN 701 (reveglucosidase alfa) Pompe program.” (http://worldpompe.org/index.php/news/591‐biomarin‐update‐for‐the‐pompe‐community). Biomarin has stated: “This decision is not based on concerns for patients’ safety or efficacy.”
The IPA Board appreciates that many factors must have gone into Biomarin’s decision to discontinue its Pompe program. Clinical development of a treatment is difficult in the best of circumstances; it is even more difficult in the rare disease field. The IPA believes that the Pompe community is fortunate to have as much interest in developing new therapies and treatments as we do. Many rare diseases do not have any treatments on the horizon.
However, the IPA also believes that the development of a treatment is, and should be, a community effort. It takes close collaboration between the scientific/medical community and the patient community to understand the disease in question, and how to treat it. Then, when the time is right, it takes industry to move potential treatments from the scientist’s laboratory to the patient in the form of clinical trials and market approvals. However, successful clinical development of a therapy is impossible without the contribution and collaboration of all three parties in our experience.
The Board of the IPA is disappointed in Biomarin’s decision to discontinue its Pompe program. We are disappointed that a potential new therapeutic option will not be pursued, but more than that we are disappointed with the way the global patient community and the patients in the trial were informed about this development.