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RareConnect.org  Connecting Rare Disease Patients Globally. We speak EN, ES, FR, IT, DE, PT, RU and SR. A @eurordis initiative.


The official #RareDiseaseDay 2018 poster is out now! Share with your friends and let's spread the word! 🌐Download the poster from: rarediseaseday.org/downloads

2017 has been a year of change and exciting new developments for RareConnect. In 2018 we are looking forward to developing new friendships to support you in your everyday lives easier so you know you are not alone.
Thank you for your support and dedication.

Wishing you peaceful holidays and a happy and healthy 2018!
~The RareConnect Team ~

"As the weeks passed and saw she never made the usual milestones, I went to our general practitioner. After blood tests, we found that Rachel had ring20 syndrome. She was 6 months old, and at that time there were only 27 reported cases in the world." ➡️Read the full story and connect with other ring20 families here: http://bit.ly/2zS3ESP ➡️Story provided by Ring20 Research & Support UK

"My daughter has been diagnosed with a Vein of Galen Malformation. I'm looking for parents who live in South Africa who also have children diagnosed and who wants to be part of our support group. We all need a little support." ~Klarissa, RareConnect member~
🌐Read Ashley's story and connect with her mother here: http://bit.ly/2gv2SE1 or search for "Vein of Galen Malformation" on rareconnect.org

We're looking for people affected by these rare diseases who would like to share their story and connect with others. Interested? Send us an email at info@rareconnect.org or visit: www.rareconnect.org/en/community/rareconnect

What a nice group!
People from Spanish speaking countries have come together for the Experts Patients and Researchers Summer School, a training course that allows patients and researchers to sharpen their advocacy skills and gain an understanding of the regulatory process of orphan medicinal products so that they are able to advocate at a European or national level.

"My name is Ylenia, I am a 22 year old girl, and have Ectodermal Dysplasia, the same as my two sisters who are 19 and 9 years old.
We grew up with this strength of character that not everyone has. Nothing hurts me now like then, I don’t feel bad because I discovered that there is no need to prove anything unless you truly believe in it. I’m happy because I’m close to people who love me for what I am not what they want me to be, I learnt to love myself because despite everything there is nothing more important in my life. It’s true, I have many fears. I’m afraid thinking about my future, I’m afraid thinking about giving life to a child, because I don’t ever want to pass on what has been passed on to all of us. I don’t know what will happen and just hope that this won’t happen again." 🌐Read Ylenia's full story on RareConnect.org. Search for the "Ectodermal Dysplasia" community

Read the heartbreaking story about the effects of potentially dangerous medications published on the #Narcolepsy RareConnect Community. 🌐Search for 'Narcolepsy' on rareconnect.org to read the full story.

Caregiving isn't only women's work, but it's largely women's work. Specially if we talk about rare diseases.
So today, we want to acknowledge it and wish you all a very happy International Women's Day!

Happy #RareDiseaseDay!

Let's raise more awareness than ever and call for more #research on rare diseases!

William was diagnosed with Ectodermal Dysplasia after a genetic analysis. When he was 2 years old his parents were concerned because William didn't have teeth and his hair was very thin and light, common symptoms of this disease.

Now he's almost 3 years old and has two teeth but one of the biggest challenges for William's parents is to introduce solid foods to his diet. .
🌐If you live in Italy and are familiar with ED, William's parent would like to meet you very much! - rareconnect.org or DM

"My name is Raquel, I have a 20 years old son with Williams Syndrome. He has several symptoms related to the syndrome: as soon as someone says hello, considers him his friend, he loves music, he has ability for languages, he is loving. He has facial features such as wide lips, frequent urination... We live in Peru but he has German Passport. He is learning English and he doesn't know German yet. I am searching for a place where he can developed more. I work and live in Peru. My oldest son lives in Germany, I would like to know if in Germany would have better care. I would like to try to let him be as much independent as possible."
🌐Connect with Raquel on the Williams Syndrome community on RareConnect.org

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