Author: Maiken Arnesen

DAY 2: CHDI Therapeutics Conference

The 15th Annual Huntington’s Disease (HD) Therapeutics Conference is currently taking place in Palm Springs. Here is a summary of the second day, put together by tweets from HDBuzz.  By HDBuzz and Phylis Kitema | Photo: HDBuzz Session: Path to prevention Background: Enroll-HD, TRACK-HD & Self Enroll Enroll-HD collects data from Huntington’s disease (HD) patients whether they have symptoms…
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DAY 1: CHDI Therapeutics Conference

The 15th Annual Huntington’s Disease (HD) Therapeutics Conference is currently taking place in Palm Springs. Here is a summary of the first day, put together by tweets from HDBuzz. By HDBuzz and Phylis Kitema | Photo: HDBuzz Morning session: Genotype and Phenotype The first session at the 15th annual HD Therapeutics Conference was “Genotype and Phenotype”, where the…
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Updates from CHDI Therapeutics Conference

Photo, left to right: Svein Olaf Olsen and Astri Arnesen at the CHDI Therapeutics Conference in 2016. The 15th Annual Huntington’s Disease (HD) Therapeutics Conference was taking place in Palm Springs. Over four days, from February 24 to 27, drug development was discussed. Summary: DAY 1 | DAY 2 | DAY 3 The CHDI (Cure Huntington’s Disease Initiative) Foundation conference is a forum for drug…
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First national meeting in Spain – Video!

In the beginning of February, all of the Spanish Huntington’s disease associations were gathered in Madrid for the first time.  Video below! Spain is one of most populated countries in Europe and have 12 Huntington’s disease associations. The meeting was an important first step in establishing collaboration between them and start working together. During the…
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Meeting on how to improve care in Europe

In January, patient advocates visited the European Reference Network for Rare Neurological Diseases. During the meeting, they discussed how to provide better care and improve knowledge of rare diseases. From www.ern-rnd.eu | Meeting video below The aims of European Reference Network for Rare Neurological Diseases (ERN- RND) are to address the unmet needs of more…
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Left to right: Olca Engin-Sarialtin, Astri Arnesen, Svein Olaf Olsen.

September 13: EHA Business Meeting

The European Huntington Association (EHA) Business Meeting is held every other year and is taking place around the same time as the EHDN Plenary Meeting. This year, the Business Meeting will take place on Sunday, September 13.  The Business Meeting is going to be held in the morning, so that it will be possible to leave Bologna…
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“RARE/D”: A NEW RARE DISEASE PODCAST

RARE/D is a new podcast series that started on December 29. On the podcast, topics such as genome editing and health care are being discussed by a multidisciplinary team. The series are now available across many platforms including iTunes and Spotify. Find the episodes here. Behind the podcast series is the the Whitworth group consisting…
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Webinars – European Reference Network for Rare Neurological Diseases

Join the webinars held by the European Reference Network for Rare Neurological Diseases on 21 January and 18 February! The first webinar is on Immune-mediated choreas. The other on Mitochondrial disorder with chorea. Webinar 1 Date: 21 January, 15-16h CETTopic: Immune-mediated choreasSpeaker: Jan Lewerenz, University Hospital Ulm, Germany Sign up here! Webinar 2 Date: 18 February,…
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EURORDIS Black Pearl Awards – Live Stream!

EURORDIS Black Pearl Awards is taking place on 18 February in Brussels. To purchase a ticket to attend the event contact martina.bergna@eurordis.org or watch a live stream of the Awards Ceremony via blackpearl.eurordis.org. What is Black Pearl Awards? From www.blackpearl.eurordis.org The EURORDIS Black Pearl Awards is an annual event held in Brussels to recognise the outstanding achievements and exceptional work of people…
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JOIN RARE DISEASE DAY 2020!

29 February 2020 will be the thirteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. Find events near you!  |  Get involved! | Add a Facebook frame! Rare Disease Day takes place on the last day of February each…
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