The photo “Maia”, from the Asturian photographer Andrés Gómez, has won the first prize in the XIII Contest of Digital Photography “People with disabilities in everyday life”, organized by the Institute for Community Integration (INICO) and the Foundation North Group. A … Continue reading →
EUPATI is a pan-European Innovative Medicines Initiative (IMI) project of 33 organizations, led by the European Patients’ Forum, with partners from patient organizations, universities and not-for-profit organisations, along with a number of European pharmaceutical companies. The goal is to help patients be more … Continue reading →
Since some months ago, I have been doing a search for a tricycle or bike for Clara. I asked to several companies and bikes stores if they could adapt a trike for Clara. But no one could do that or … Continue reading →
The online RE(ACT) Community is organized around four main axis dedicated to research on rare and orphan diseases: Learn, Meet, Share and Support. Learn from the knowledge and experience of other researchers and patients; meet other researchers and facilitate the … Continue reading →
In my last post, about the V International congress around achondroplasia and other skeletal dysplasia, I mentioned the participation of Dr. Elvire Gouze and her lecture. She is responsable for the developement of the soluble FGFR3. Dr. Elvire Gouze was kind to … Continue reading →
You can “unlock” a potential project to treat achondroplasia through the REACT community. I discovered this community several months ago and I only share it on facebook, but I share it now here, the right place to ask your support once just one person besides me decided to support this project.
The RE(ACT) Community is organized around four main axis dedicated to research on rare and orphan diseases: Learn, Meet, Share and Support. By supporting a research projects declared eligible for funding by the RE(ACT) and BLACKSWAN Foundation Scientific Advisory Board are associated to a Disease Dossier and are also visible on a specific section of the platform dedicated to crowdfunding (“Projects” page). Once the Scientific Advisory Board approves a project, another criterion is required to be entitled for funding: a minimum number of followers on the Disease Dossier. This additional criterion prevents the dispersion of small donations through a large variety of research projects.
And you can be a supporter by following achondroplasia and help open a new project.
In Radiopedia site you can see that in a child with achondroplasia the anatomy of the spine suffer changes as: posterior vertebral scalloping progressive decrease in interpedicular distance in lumbar spine gibbus : thoracolumbar kyphosis with bullet-shaped / hypoplastic vertebra short pedicle canal … Continue reading →
I just had to share this brand new video from your friends of Alpe Foundation.
When I knew about Alpe, I contacted them right away and the most joyful person answered back: Carmen Alonso. A few months later, in June 2013, we did a 1700 km car journey with Afonso and Clara to meet them.
Carmen and all Alpe team received us with open arms, gave us support, important contacts, knowledge based on experience and above all, hearts full of good feelings and true friendship. We felt at that time so must cherished by people that we didn´t know until that point. The feeling of belonging was overwhelming!!!
Alpe have done an impressive and relevant work with families who achondroplasia visited.
I was told today about this project. It hasn´t started yet, but it will very soon. This platform will bring together patients and parents of children carrying rare diseases, allowing them to share knowledge, scientific breakthroughs and experiences, having behind an … Continue reading →