Philippe Pakter

Director of patient advocacy group for children suffering from the rare disease, Pierre Robin Sequence. Rare disease dad.

[Philippe Pakter @PhilippePakter]

"The benefits of the treatment are exaggerated; the risks are minimized; contradictory studies are omitted outright - and as an added bonus these EU Guidelines engage in sheer speculation". @EU_Health @ministerVWS @Karl_Lauterbach @eurordis @ErasmusMC https://t.co/5hAB6EIqo0

[Philippe Pakter @PhilippePakter]

When EU Guidelines for a rare disease are officially rejected by the EU's top two experts on that rare disease, then the EU Guidelines are nonviable. An investigation is required @EU_Health @ministerVWS @Karl_Lauterbach @eurordis @ErasmusMC @RDO_ErasmusMC https://t.co/5hAB6EIqo0

[Philippe Pakter @PhilippePakter]

De EU-Guidelines voor een zeldzame ziekte zijn officieel verworpen door de twee top deskundigen van de EU op het gebied van die zeldzame ziekte. Die EU Guidelines zijn dus niet levensvatbaar. @cranio_ern @eurordis @ALBredenoord @ErasmusMC @RDO_ErasmusMC https://t.co/5hAB6EIqo0

[Philippe Pakter @PhilippePakter]

Wenn die EU-Leitlinien für eine seltene Krankheit offiziell von den beiden führenden Experten der EU für diese seltene Krankheit abgelehnt werden, dann sind die EU-Leitlinien nicht umsetzbar. @EU_Health @Karl_Lauterbach @hugodejonge @eurordis @ErasmusMC https://t.co/genpRQYO9i

[Philippe Pakter @PhilippePakter]

When EU Guidelines for a #raredisease are officially rejected by the EU's top two experts on that rare disease, then the EU Guidelines are nonviable. @EU_Health the ERNs should do better. @cranio_ern @eurordis @ALBredenoord @ErasmusMC @RDO_ErasmusMC https://t.co/5hAB6EIqo0

[Philippe Pakter @PhilippePakter]

A €50,000 EU-funded ERN #raredisease guideline development project - run by a healthcare provider which is not a center of expertise for that rare disease. @EU_Health will you launch an investigation, now? @eurordis @cranio_ern @hugodejonge https://t.co/H1UtWk8EZa

[Philippe Pakter @PhilippePakter]

Zero patients in the Guideline Development Group - to produce #raredisease guidelines which are supposed to be “patient centered.” @EU_Health - official investigation, now? @Karl_Lauterbach @hugodejonge @eurordis @rarediseasesint @cranio_ern https://t.co/5hAB6F01fy

[Philippe Pakter @PhilippePakter]

Europes’s top two experts on this rare disease flat out excluded from the drafting group - in defiance of all reason and common sense. @EU_Health - official investigation, now? @Karl_Lauterbach @hugodejonge @eurordis @rarediseasesint @cranio_ern https://t.co/5hAB6EIqo0

[Philippe Pakter @PhilippePakter]

Dies ist eine DYSFUNKTION im System des Europäischen Referenznetzwerks ERN der EU. @Karl_Lauterbach werden Sie bitte eine offene offizielle Untersuchung einleiten? @EU_Health @hugodejonge @eurordis @rarediseasesint @cranio_ern https://t.co/genpRQYO9i

[Philippe Pakter @PhilippePakter]

This is DYSFUNCTION in the EU European Reference Network ERN system. @EU_Health will you launch an open official investigation, now? @Karl_Lauterbach @hugodejonge @eurordis @rarediseasesint @cranio_ern https://t.co/5hAB6EIYdy

[Philippe Pakter @PhilippePakter]

Dies ist eine DYSFUNKTION im System des Europäischen Referenznetzwerks ERN der EU. @Karl_Lauterbach werden Sie bitte eine offene offizielle Untersuchung einleiten? @EU_Health @hugodejonge @eurordis @rarediseasesint https://t.co/genpRQYO9i

[Philippe Pakter @PhilippePakter]

ERN #raredisease Guidelines should be based on experience and expertise, not relationships and politics. @EU_Health @SKyriakidesEU @hugodejonge @eurordis @eupatientsforum @VSOPzeldzaam @ErasmusMC @cranio_ern https://t.co/ul8FIn7atA

[Philippe Pakter @PhilippePakter]

@cranio_ern Evidence-based, patient-centered, #raredisease Guidelines drawing on the best experts in Europe: ERN-Cranio @cranio_ern lowers the bar for the entire ERN system. @EU_Health @eurordis @VSOPzeldzaam @hugodejonge @ErasmusMC https://t.co/5hAB6EIqo0

[Philippe Pakter @PhilippePakter]

Evidence-based patient-centered #raredisease Guidelines drawing on the best experts in Europe: ERN-Cranio lowers the bar for the entire ERN system. @EU_Health Dr. Andrzej Rys when will you take action? @eurordis @eupatientsforum @VSOPzeldzaam @hugodejonge https://t.co/5hAB6EIqo0

[Philippe Pakter @PhilippePakter]

The EU's ERN system: @EU_Health is this as good as it gets? These are the #raredisease Guidelines produced with €50,000 of EU taxpayer money? Is there no accountability for EU rules, or EU funding? @EUombudsman @hugodejonge @eurordis @eupatientsforum https://t.co/5hAB6EIqo0

[Philippe Pakter @PhilippePakter]

@hugodejonge a Dutch hospital @ErasmusMC was happy to accept EU funding - but unwilling to respect EU rules. You are the new Dutch Minister of Health. What action will you take? When? @Rijksoverheid @eurordis @VSOPzeldzaam https://t.co/5hAB6F01fy

[Philippe Pakter @PhilippePakter]

@hugodejonge een Nederlands ziekenhuis @ErasmusMC nam graag EU-financiering aan - maar was niet bereid de EU-regels te respecteren. U bent de nieuwe Nederlandse minister van Volksgezondheid. Welke actie gaat u ondernemen? Wanneer? @VSOPzeldzaam @eurordis https://t.co/5hAB6F01fy

[Philippe Pakter @PhilippePakter]

The EU's ERN system can do and should do much better than this for EU patients with #rarediseases. @EU_Health @SKyriakidesEU @Rijksoverheid @hugodejonge @eurordis @eupatientsforum https://t.co/5hAB6EIqo0

[Philippe Pakter @PhilippePakter]

In the context of #raredisease research, #DiversityandInclusion means including the #raredisease patients! Thank you @ElsevierConnect CEO Kumsal Bayazit for taking diversity seriously, and granting us #OpenAccess on our patient perspective article. https://t.co/xbta7nrmA4

[Philippe Pakter @PhilippePakter]

A patient's perspective on the #raredisease, Pierre Robin Sequence. Published in "Seminars in Fetal and Neonatal Medicine". @eurordis @rarediseasesint @VSOPzeldzaam https://t.co/xbta7nrmA4