Francesca Sofia interviews Rosaria Vavassori – Final

Last episode of the interview on the creation of a Rare Disease Registry and on the proactive role that patients can have in this process.
Many thanks again to Francesca Sofia for this fantastic experience!
You can watch the full interview on Youtube
https://www.youtube.com/watch?v=i5Io_k3uKA0&feature=youtu.be

Piattaforme di registri (sesta parte intervista Rosaria Vavass…

Con oggi si conclude la serie dedicata ai registri di malattia con un'ospite eccezionale, Rosaria Vavassori! In questo estratto affrontiamo il tema delle piattaforme informatiche che offrono l'infrastruttura già pronta ai registri nascenti.L'intervista completa è disponibile qui: https://youtu.be/i5Io_k3uKA0

Posted by Science Compass on 9. maí 2017

Francesca Sofia interviews Rosaria Vavassori – part 5

The fifth episode of the interview with Francesca Sofia about Rosaria´s experience with the creation of the Italian Registry and the European Registry for Alternating Hemiplegia.
The Register for a Rare Disease, as a valuable tool to support the research until the final development of an effective treatment, is by its very nature a long-term investment and requires considerable planning and management skills for the patients associations that want to have an active role in this process.

Motivazione e competenze (quinta parte intervista Rosaria Vava…

"Acquisire uno spirito più "imprenditoriale" è un passaggio difficile ma cruciale per le associazioni che vogliono fare la differenza nello sviluppo della ricerca sulla propria malattia". Rosaria Vavassori

Posted by Science Compass on 8. maí 2017

Francesca Sofia interviews Rosaria Vavassori – part 4

Fourth part of the inteview with Francesca Sofia.
The patient associations play a strategic role not only in the creation and governance of a Rare Disease Registry, but also in its sustainability

Registro Internazionale (quarta parte intervista Rosaria Vavas…

7 minuti per capire come può crescere un registro di malattia rara su scala internazionale, quali sono i rischi che si corrono e chi sono gli attori fondamentali per la sopravvivenza e lo sviluppo dello strumento a lungo termine. In questo quarto estratto della conversazione con Rosaria Vavassori tantissime riflessioni e spunti che possono cambiare già da oggi il nostro modo di pianificare un registro!

Posted by Science Compass on 7. maí 2017

Francesca Sofia interviews Rosaria Vavassori – part 3

Motivation, competence and mutual respect and trust: these are the key ingredients of a multidisciplinary workgroup responsible of the creation and management of an effective Registry for a Rare Disease.

Il gruppo di lavoro (terza parte intervista Rosaria Vavassori)

Quanto è importante il gruppo di lavoro che realizzerà il registro? E come raggiungere il livello di collaborazione necessario per farlo funzionare al meglio? Terza puntata della nostra coversazione sui registri con Rosaria Vavassori, una delle persone più esperte e con maggiore esperienza in questo campo!

Posted by Science Compass on 6. maí 2017

Francesca Sofia interviews Rosaria Vavassori – part 2

Here is the second episode of Rosaria´s interview with Francesca Sofia about the creation of the Italian Registry for AHC.

Il Registro Italiano (seconda parte intervista Rosaria Vavassori)

In questo secondo estratto dell'intervista a Rosaria Vavassori, past president dell'associazione Emiplegia Alternante, il racconto di come è nato il registro italiano e i segreti del suo successo.

Posted by Science Compass on 5. maí 2017

Francesca Sofia interviews Rosaria Vavassori – part 1

The first episode of Rosaria´s interview with Francesca Sofia about the creation of the Italian Registry for AHC, published by Science Compass
“Are you planning to create a Registry for a Rare Disease?
Do you want to understand what steps to take and what actions can guarantee the best result?
In this video the first part of the interview with Rosaria Vavassori. Past President of the Italian Association for AHC (A.I.S.EA); about 15 years ago she created a Registry that contributed to the identification of the gene responsible for her son’s disease. In this first video she tells us about her motivations and the push after the diagnosis.
PS
The interview is divided into 6 episodes

La diagnosi (prima parte intervista Rosaria Vavassori)

State pensando di costruire un registro di malattia? Volete capire quali passi compiere e quali azioni garantiscono il massimo risultato? In questo video la prima parte della nostra conversazione con Rosaria Vavassori. Past president dell'associazione Emiplegia Alternante, circa 15 anni fa ha realizzato un registro che ha portato all'identificazione del gene responsabile della malattia di suo figlio. In questa prima clip, ci racconta le sue motivazioni e la spinta dopo la diagnosi.p.s.L'intervista è suddivisa in 6 puntate (una al giorno a partire da oggi). Stay tuned 😉

Posted by Science Compass on 4. maí 2017

Matthew Sweney – Minneapolis 2014

Dr. Matthew Sweney was interviewed by AHCIM in July 2014

“AHC robs the child of functions that everyone of us take for granted”

The purpose of AHC International Library is to collect information about AHC and related disorders and make them visible for everyone.

Doctors, researchers and family can share information on this media and together we can help each other get closer to the goal of having an effective treatment for AHC.

AHCIM will continue to interview interested parties that have information on AHC or related disorders to share .

For more information: www.ahcim.com

Contact us at ahc@ahc.is

David Goldstein – Duke University 2014

Dr. David Goldstein was interviewed by AHCIM in October 2014

 

David Goldstein is an American human geneticist. He trained in theoretical population genetics at Stanford University (PhD 1994), where he worked with Marcus Feldman and Luca Cavalli Sforza. Goldstein is founding Director of the Institute for Genomic Medicine at the Columbia University Medical Center, Professor of Genetics and Development and directs the genomics core of Epi4K and administrative cores of Epi4K with Dan Lowenstein and Sam Berkovic.

The purpose of AHC International Library is to collect information about AHC and related disorders and make them visible for everyone.

Doctors, researchers and family can share information on this media and together we can help each other get closer to the goal of having an effective treatment for AHC.

AHCIM will continue to interview interested parties that have information on AHC or related disorders to share .

For more information: www.ahcim.com

Contact us at ahc@ahc.is

Louise Prouse – London 2015

Louise Prouse, mother of Toby, was interviewed by AHCIM in May 2015 in London, UK

The purpose of AHC International Library is to collect information about AHC and related disorders and make them visible for everyone.

Doctors, researchers and family can share information on this media and together we can help each other get closer to the goal of having an effective treatment for AHC.

AHCIM will continue to interview interested parties that have information on AHC or related disorders to share .

For more information: www.ahcim.com

Contact us at ahc@ahc.is

Sparks Family – Minneapolis 2014

The Sparks family was interviewed by AHCIM in Minneapolis 2014

“Doctors have told us that there is no such thing as AHC”

The purpose of AHC International Media is to collect information about AHC and related disorders and make them visible for everyone.

Doctors, researchers and family can share information on this media and together we can help each other get closer to the goal of having an effective treatment for AHC.

AHCIM will continue to interview interested parties that have information on AHC or related disorders to share .

For more information: www.ahcim.com

Contact us at ahc@ahc.is