CROWDCDG - Fundraising campaign for Congenital Disorders of Glycosylation (CDG) Immunology Research16/5/2018 The Portuguese Association for CDG (APCDG) and CDG&Allies–Patients and Professionals Association International Network (PPAIN) are determined to raise funds to foment CDG research, the key to improve diagnosis, management and find therapies for such a group of rare diseases. CDG are a family of rare metabolic diseases with more than 130 types identified and a wide and severe clinical spectrum. The majority of CDG still do not have a cure and targeted therapies are scarce. Although the immune system is often affected, and high child mortality numbers are due to severe and recurrent infections, CDG Immunology is still an unknown and unexplored field. In line with the activities of the 16th May World CDG Awareness day, APCDG is launching a new fundraising movement and appealing to all community to join us in facing this urgent unmet need. ‘APCDG and CDG&Allies-PPAIN are devoted to accelerate research for all CDG types in an holistic manner. There is a high sense of urgency in the immunological knowledge for CDG because if we learn more about this area, it can really save lives and improve patients’ and family members’ life quality! The importance is clearly seen by the fact that other CDG patient groups are making a joint effort with us to address this and support this project financially. We are globally united to help CDG children and adults!’, said Rosalia Felix, mom to a CDG patient and APCDG founder and vice-president. For the past 2 years, CDG&Allies-PPAIN invested in research to unravel immunological involvement in CDG (WG CDG & Glycoimmunology) after identifying the lack of knowledge in this area as one of the biggest needs from the patient perspective. ‘We witnessed that immune symptoms are extremely worrying for CDG families because each infection puts their kids in danger. Glycans and the immune response are interrelated influencing the function of every cell and system in our body. The more we investigate, create and share scientific knowledge, the more we contribute to the development of better and precise therapies to treat our patients’ explained Paula Videira, CDG&Allies–PPAIN director and Glycoimmunology Group Leader. The fundraising campaign for the Immunology Project will be active from May 16th until May 31th and we encourage everyone that wish to be involved to visit, watch the video and donate HERE. If you wish to obtain more information, do not hesitate to contact sindromecdg@gmail.com.
8 Comments
leo valsa
25/7/2018 06:22:57 am
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kaith leonard
8/6/2020 04:16:18 pm
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Sharon Wayne
4/11/2020 09:28:57 pm
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Deebra Jones
4/4/2019 05:09:09 pm
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Mary Counts
22/8/2020 09:30:41 am
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Mike rose?
15/12/2020 07:45:37 am
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Lara Fox
7/1/2021 06:19:11 pm
REAL URGENT EFFECTIVE SPELL CASTER TO HELP BRING BACK EX LOVER AND SAVE MARRIAGE : http://drjumbaspellhome.wordpress.com I recently saw a testimony about a spell caster in a blog I visit for relationship counseling problems because I had been having serious issues with my husband and we had been dating for six months, he just suddenly changed, he was returning my calls, he started cheating,he was hurting me in so many ways i never thought possible and I just thought I should try it maybe out of desperation ..and I contacted them. At first everything felt dreamy and unbelievable, their consultations and solution was a little bit easy and strange and I was scared a little cos I heard read and heard lots of stories of spell casters and I never really believed in spell ..I played along with a little hope and faith and I was sent some few stuffs after everything and it worked like a miracle, everything went to a whole new direction, I guess it was all good faith that made me read That particular post that fateful day. I hope they could help other people too like they did a little and I got everything I wanted and wished for my husband, my family and my life back their address is; wiccalovespelltools@gmail.com Call him or add him on WhatsApp via: +19085174108
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Aaron Jeremy
14/1/2021 02:50:07 pm
CHIEF DR LUCKY HERBAL THERAPY
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