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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.

https://www.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

Less than 50 days for #RareDiseaseDay. Find out all the ways that you can get involved in!!
👉🏽 www.rarediseaseday.org

"The pain has only gotten worse in my spine and extremities as I age. I'm only 23... I hate taking pills, but my doctor is trying to figure out the best options for me. I just don't want to hurt anymore. I'm so desperate to feel normal again. I can't keep going on like this. How do people manage living with Ehler-Danlos Syndrome? This is all new to me..." ~ Kalah is a member of the EDS RareConnect Community.

"The diagnosis of Pseudomyxoma Peritonei changed my life. I was operated and had to fight because I wanted to live at all costs. Now, that a few months have gone by, I have the feeling of not knowing how to master my life. The future and my prognosis consume me. I have many questions that always remain unanswered. Have any of you experienced something similar? It would help me to exchange experiences with someone." *Vivanna is a member of the PMP community on RareConnect.org

Rare Disease Day 2017 theme will be RESEARCH!! Imagine going to see your doctor only to be told that they don't know what's happening to your body. Or maybe they can diagnose your disease but there's no cure or treatment. Or that the treatment available is not fully effective. Imagine what would it be to live without answers. Research is key. It brings hope to millions of people living with a rare disease across the world.

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