Inês Alves

People’expert on Skeletal Dysplasia, CHRC-University of Évora, COMP-EMA member, ERN BOND ePAG, European Rare Bone Forum board member

[European Reference Network on Rare Bone Diseases @ern_bond]

🗣️🇮🇹 On the afternoon of 16 October the ERN BOND Italia Meeting will be held for Italian ERN BOND members.

The programme will be shared soon!!

hashtag#ERNBOND hashtag#plenarymeeting hashtag#milan hashtag#ernbonditalia

[Karen Heath @kheath71]

The 16th #ISDS2024 meeting has started - 49 talks and > 50 posters on #skeletal dysplasias over the next 3 days here in Madrid.

[Inês Alves @InesA_Beyond]

A Seminar with ERN BOND endorsement. Thank you for the support. #ANDOPortugal

[European Reference Network on Rare Bone Diseases @ern_bond]

Kicked off 2024 with a powerful seminar on bone dysplasias in the Azores, organized by @ANDOPortugal. Members and ePAGs came together to expand knowledge on skeletal dysplasias & ERN BOND activities. Special thanks to André Travessa for presenting ERN BOND. #ERNBOND #BoneHealth

[Moira Cheung @moiracheung]

Growth reference charts for children with hypochondroplasia. https://t.co/K6N6jJTPk9

Thank you to all the families with hypochondroplasia that contributed growth data to make this possible!!

[Moira Cheung @moiracheung]

Finally! An imaging guideline for FMS in Achon - settings for your MRI… send this to your imaging department.. well done #felice Darco

[Inês Alves @InesA_Beyond]

Are you over 18 yo and have a skeletal dysplasia/rare bone condition? Participate in the #MovementPatternsResearchStudy https://t.co/ATkdXk8gEk

[Inês Alves @InesA_Beyond]

@DrAyseZ Journals should just start paying reviewers. Volunteer peer review is an abuse. I had a paper for 12 months on hold because the journal could not find reviewers. Obviously. We pay journals, but reviewers, the critical input, is for free?! I stopped doing free reviews

[Inês Alves @InesA_Beyond]

@kheath71 @ern_bond @acondroplasia_ Indeed, a high level meeting in skeletal dysplasias organized by Sérgio Sousa. In between keynote talks, there were numerous case reports presented by young professionals! Well done. @EuRRBone @ern_bond

[Karen Heath @kheath71]

Natasha Appelman-Dijkstra from Leiden talking about the European registries on rare bone disorders @EuRRBone with @ern_bond at the 4th meeting on rare bone diseases in Coimbra, Portugal.

[European Rare Bone Forum @RareBoneForum]

During the RBD Summit 2021 core aspects were discussed to overcome challenges in care and improve the lives of people living with RBDs. This new article provides an overview of the key points from this meeting.
https://t.co/Jzcp5VbvDM

#erbf #rareboneforum #rareboneorg #rarebone

[Moira Cheung @moiracheung]

Calling adults with genetically confirmed #hypochondroplasia.. I’m putting together growth charts but missing adult height data. Can you help? If so please DM me your DOB, gender, date of measurement, height in cm, genetic result if you have it. 🙏

[GemstoneCOST @CostGemstone]

We are excited to share some great news! The third GEMSTONE ITC grant call is now open!

Please visit here for more information:
https://t.co/NTqM6bTb70

[Inês Alves @InesA_Beyond]

@cpt340 A. E trajeto mais curto NY-madrid

[European Reference Network on Rare Bone Diseases @ern_bond]

Webinar Series Rare Bone Diseases: The pathogenesis and consequences of having too much bone

▪️Chairs: Natasha Appelman-Dijkstra and Adalbert Raimann
▪️Speaker: Prof Wim van Hul

⏰Wednesday 31st May 2023, from 16:00 to 17:00 CEST

Register here ⤵️
https://t.co/WHP1DtyyCa

[European Reference Network on Rare Bone Diseases @ern_bond]

Special Issue “Rare skeletal disorders: a focus on ERN BOND's experience”. BOND members are invited in contributing with Original Research articles, Case Reports and Review articles.

⏰ Deadline: 30th June 2023

More informations ⤵️
https://t.co/0ypR8RBTza

[Jay "Thymocyte" Hwang @Path4People]

👩‍🔬👏 Mary Papanikolaou deserves as much praise as her better known husband. She underwent almost daily Pap smears 🔬~ 21 years for her husband's cervical cancer research 😧. Her dedication to advancing women's health is unprecedented + remarkable!#funfactsofpathology #path4people

[ERDERA @ERDERA_org]

Don't miss the opportunity to expand your knowledge in NGS Diagnostics, Genetic Variants, and Quality Assurance. Join the 5th International Training Course in Warsaw on 18-20 Oct 2023.
Open to researchers, clinicians and more.
🚨Register by 20 June 2023.
ℹ️https://t.co/g4x7gK4niX

[European Reference Network on Rare Bone Diseases @ern_bond]

Here a nice group picture from the ERN BOND plenary hybrid meeting, which took place, today, at Istituto Ortopedico Rizzoli, Bologna.

[International Achondroplasia Forum @ACHONforum]

A great group assembled for the first EAF congress, Advances in Achondroplasia. Look out for next years meeting and join in