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Jun 18

Italy: Meeting, Milan – June 21, 2025

By events, news

A.I.En.P. – ONLUS

www.aienp.it

Care Amiche, Cari Amici,
mancano solo 5 GIORNI al nostro incontro del prossimo 21 giugno a Milano.
Per tutti coloro che non riusciranno a venire in presenza, l’Istituto Mario Negri che ringraziamo ha messo a disposizione al seguente link https://urly.it/319_7r per poter vedere l’incontro da remoto.
Sarà possibile assistere all’incontro e inviare le proprie domande esclusivamente via chat.
Come sempre, vi ricordiamo l’importanza di essere in presenza per poter confrontarsi con i ricercatori e clinici ma anche con altri familiari che hanno vissuto o stanno vivendo la stessa esperienza.
VI ASPETTIAMO!

A SABATO!

Dear Friends,
There are only 5 DAYS left until our meeting on June 21 in Milan.
For all those who will not be able to come in person, the Mario Negri Institute that we thank has made available at the following link https://urly.it/319_7r to be able to see the meeting remotely.
It will be possible to attend the meeting and send your questions exclusively via chat.
As always, we remind you of the importance of being in person to be able to deal with researchers and clinicians but also with other family members who have lived or are having the same experience.
WE ARE WAITING FOR YOU!
SEE YOU ON SATURDAY!
Jun 18

USA: Family Conference, Chicago, IL – July 11-13, 2025

By events, news, Upcoming patient association events

CJD Foundation (USA)

secure.qgiv.com/event/2025conference/

Each year the Family Conference gathers researchers, medical professionals and families in person. Here are some of the highlights.

Family Workshops: Friday focuses on families, with sessions including Sporadic CJD Workshop, Genetic Prion Disease Workshop, Clinical Prion Disease Basics Information Session, Prion Disease Research Overview, and Bereavement Workshop. The day concludes with a welcome reception to families to meet one another or catch up with friends met in prior years.

Keynote Presentation: In 2024, Simon Mead, BM BCh, FRCP, PhD, Clinical Professor, MRC Prion Unit at UC London, Institute of Prion Diseases, London, England, presented the Keynote Address in Honor of Dr. Pierluigi Gambetti: Can Genetics Help in the Fight Against CJD?

Research Grant Reports: Thanks to our supporters, the CJD Foundation funds many research grants each year, and each of those researchers provided an overview of their work at the conference, followed by Q&A sessions.

Moving Roundtables: In this segment, always a favorite of both families and professionals, families rotate among tables in small groups, and sit for informal Q&A with keynote and other speakers, workshop leaders, and grant recipients.

CDC and NPDPSC Updates: Experts from the Centers for Disease Control and Prevention and National Prion Disease Pathology Surveillance Center provide updates on their important work.

Family Panel: Hear directly from family members whose loved ones had unique experiences with CJD and learned how they are now making a difference in the fight against CJD.

Banquet: At each year’s banquet, we present an overview of the CJD Foundation’s accomplishments and year in review. We are also pleased to recognize some key volunteers and leaders in the prion disease community. Winners of the Strides for CJD 2024 fundraising competition will also be recognized and memorial tributes to their loved ones and other highlights are shared.

 

Register by Email or Mail

Download, complete, and submit this registration form to register via email or mail. Registration costs $250.00.

Jun 18

Brazil: Family Panel – November 5, 2025

By events, news, Upcoming patient association events

dcjBRASIL

www.dcjbrasil.org

DCJBrazil Family Panel “A global union for prion disease awareness and support”

Description: This family panel brings together voices from across the prion disease community to share their lived experiences. Through personal stories, challenges, and moments of hope, families offer unique insight into life with a rare disease. This panel will also include a speech about how families can handle this very difficult time and an enlightening talk about prion disease therapies.

Format and duration: This panel will be in a hybrid format and will especially happen on November 5th.

Target audience: Families affected by prion diseases.

Relevance: The aims of this panel are:

•          Empower families by sharing their journeys

•          Encourage community support and advocacy

•          Help families how to handle this process

•          Inform about prion disease therapies

Restrictions on participation: Participation by invitation. For invitations, please contact Eriton Cunha via email (prionsprotein@gmail.com).

Dec 30

Clinical Trial Update for Prion Diseases, December 2024

By Ionis Pharmaceuticals, news, research

December 2024

December 30th, 2024 – Enrolment is now complete for the Ionis Phase 1/2a clinical trial of ION717 called PrProfile for symptomatic prion disease patients. Updates will be provided as they become available. Please review the attached Community Statement.

August 2024

August 16th, 2024 -We are pleased to share with you the attached Community Statement from Ionis announcing that the pause on recruitment for their PrProfile Prion Disease study has been lifted. In addition, all planned clinical trial locations for PrProfile are now active, including several additional clinical trial sites that were not part of the earlier stage of enrollment – 16 in total.

Please review the attached Community Statement. We remain hopeful with the continued progress toward potential drug developments and clinical trials that may lead to a treatment or cure.

April 2024

April 9th, 2024 -Ionis has released the following community statement on the PrProfile clinical trial recruitment pause:

March 2024

March 26th, 2024 – Ionis has just announced the activation of a site in Gunma, Japan for the PrProfile Study.

You can learn more about this site here: A Study to Assess the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of ION717.

As always, individuals interested in learning more about the trial/site information can contact PrionDisease@clinicaltrialmedia.com and/or call +1- (844) 221-3587.

March 25th, 2024 – Ionis has just announced the activation of a site in Tel Aviv, Israel for the PrProfile Study.

You can learn more about this site here: A Study to Assess the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of ION717.

As always, individuals interested in learning more about the trial/site information can contact PrionDisease@clinicaltrialmedia.com and/or call +1- (844) 221-3587.

March 19th, 2024 – Ionis has just announced the opening of two enrolment locations in Japan – one in Tokyo and the other in Yamaguchi for the PrProfile Study.

You can learn more about this site here: A Study to Assess the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of ION717.

As always, individuals interested in learning more about the trial/site information can contact PrionDisease@clinicaltrialmedia.com and/or call +1- (844) 221-3587.

March 13th, 2024 – Ionis has just announced the opening of an enrolment site in Montreal, Canada (McGill University Health Centre) for the PrProfile Study.

You can learn more about this site here: A Study to Assess the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of ION717.

As always, individuals interested in learning more about the trial/site information can contact PrionDisease@clinicaltrialmedia.com and/or call +1- (844) 221-3587.

February 2024

February 21st, 2024 – Ionis has just announced the opening of an enrolment site in Boston, USA (Massachusetts General Hospital) for the PrProfile Study.

You can learn more about this site here: A Study to Assess the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of ION717.

As always, individuals interested in learning more about the trial/site information can contact PrionDisease@clinicaltrialmedia.com and/or call +1- (844) 221-3587.

February 3rd, 2024 – Ionis has just announced the opening of an enrolment site in Germany for the PrProfile Study. This is the third site to open outside of the USA.

You can learn more about this site here: A Study to Assess the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of ION717.

As always, individuals interested in learning more about the trial/site information can contact PrionDisease@clinicaltrialmedia.com and/or call +1- (844) 221-3587.

January 2024

January 27th, 2024 – Ionis has just announced the opening of an enrolment site in Barcelona, Spain for the PrProfile Study. This is the second site to open outside of the USA.

You can learn more about this site here: A Study to Assess the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of ION717.

As always, individuals interested in learning more about the trial/site information can contact PrionDisease@clinicaltrialmedia.com and/or call +1- (844) 221-3587.

January 24th, 2024 – Ionis has announced that they have opened a third enrollment site in Canada (University of Alberta) for the PrProfile Study.

You can learn more about that site here: A Study to Assess the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of ION717.

Anyone interested in learning more about the trial/site information can contact PrionDisease@clinicaltrialmedia.com and/or call +1- (844) 221-3587.

As of January 20, 2024, the UCLA Neurology Clinic in Los Angeles, California, United States has been added as the next prion disease human clinical trial site.

Please email PrionDisease@clinicaltrialmedia.com or call (844) 221-3587 to obtain more information on the study details and clinical trial site locations.

December 2023

Ionis has provided an update on their prion disease clinical trial –

The status of the Ionis Clinical Trial on clinicaltrials.gov is now “Recruiting“.
One site is listed as active and recruiting at this time and that is in the U.S. at the University Hospitals Cleveland Medical Center in Ohio.

Key points:

  • The clinical trial is for persons in the early stages of active disease.
  • Trial sites will be rolled out in phases (not all sites will be live at the same time).
  • Ionis does not determine patient eligibility to participate in the clinical trial.
  • Refer interested patients to their physician or a clinical trial site to discuss eligibility.
  • It will be the determination of the clinical trial sites if they include patients from other countries.

We encourage you to:

  • Familiarize yourself with the links within the Community Statement so that you can provide support and information to your patients and families.
  • Familiarize yourself with the FAQs included in the Community Statement – we need to provide consistent messaging to our patients and families.
  • Share the community statement with your patients and families.

Remember, this is just a first step in a very long process. Research does take time but each step leads us closer to discovery. Regardless of the outcome, this is a positive step for those impacted by prion disease.

The Ionis Clinical Trial is posted on the clinical trials website.

Here is the link:  A Study to Assess the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of ION717

The current status is “not yet recruiting”. Even though no sites are open, this is a normal step in the process. You are able to see some of the study criteria and other information.

We will continue to provide you with updates as things progress.

October 2023

We are please to provide the following community statement that has just been released by Ionis about their upcoming clinical trial.

Nov 04

International CJD Awareness Day awareness campaign on November 12th

By events, news

International CJD Awareness Day is November 12th

Be a part of our awareness campaign for social media

#cjdawareness #priondiseaseawareness

Post and share that you are ‘Globally united for prion disease awareness‘ to your local CJD/prion disease community to raise awareness.

Available to download are:

  • Facebook posts and group cover photo
  • Instagram posts
  • LinkedIn posts and background
  • Virtual Background
  • A4 poster to print out
  • Infographic about prion disease

Click the images below to view and download

International CJD Awareness Day – A4 poster (pdf)
Prion disease infographic (pdf)

Social media graphics: 

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