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SACE organized a Hands Across the Sand event for the Charleston area at Folly Beach, SC on May 18, 2013. This was one of over 100 similar gatherings around the world, sending the message "NO" to offshore drilling and risky fossil fuels and "YES" to clean energy. More information at blog.cleanenergy.org/2013/05/23/37-southeastern-communiti...
As part of the day of rare diseases, Sociemuvem held "The Week of Rare Diseases" at the facilities of the Universidad Veracruzana Campus Minatitlán, where various activities were carried out to show support to patients with diseases. Here the sample of one of them.
En el marco del día de las enfermedades raras, Sociemuvem llevó a cabo "La semana de las enfermedades raras" en las instalaciones de la Universidad Veracruzana Campus Minatitlán, donde se realizaron diversas actividades para mostrar apoyo a los pacientes con enfermedades. Aqui la muestra de una de ellas.
Our son Carson has Nicolaides Bariatser Syndrome as well as Paroxysmal Familial Dyskinesic Chorea. Having these two rare genetic diseases makes him the only case eknown in the world.
Sono una paziente. Una paziente tipo. Viaggi della speranza, sospesi per mancato ascolto. Pluri-diagnosticata. Behcet, Raynaud, Lyme, Cfs, Encefalopatia Neuro-Tossica, ma con buona probabilità sono e resto una paziente Swan. Giudicata in ogni modo possibile, è stato passato allo scanner ogni centimetro quadro della mia esistenza: la mia intelligenza, la mia sensibilità e persino la mia allegria. Sono una persona forte, ma in questa battaglia ho perso fiducia negli operatori. E non potendo contare su una famiglia, vivo in stato di abbandono istituzionale. Chiedo una voce
We sent this picture in once already and all our employees have been waiting to see it it up on your website. It is a jpg but it wont attach. Can you give me an email address to send it to? We have had a "get involved link" with the Rare Disease Day logo on all our company emails for three months. Please email me so i can reply and you can see the good news we have been spreading! Can you put our photo up before the 28th? Thank you and thanks for all you do!
Symphony Clinical Research
SACE organized a Hands Across the Sand event for the Charleston area at Folly Beach, SC on May 18, 2013. This was one of over 100 similar gatherings around the world, sending the message "NO" to offshore drilling and risky fossil fuels and "YES" to clean energy. More information at blog.cleanenergy.org/2013/05/23/37-southeastern-communiti...
On May 17, 2014, Charleston-area residents gathered on Folly Beach to say "NO" to offshore drilling and risky fossil fuels and "YES" to clean energy, as part of Hands Across the Sand/Land day of action. #JoinHANDS #NoKXL
preparativi alla piantumazione dell'albero raro Chiari e Siringomielia con legambiente e la scuola Vespucci Catania rarediseaseday 2019
Bente Luther-Medock with one of Ciro's barista trainers on her farm, Machare, near Kilimanjaro in Tanzania
PANTHERx Rare is the nation's largest independent specialty pharmacy and only health entity accredited (ACHC) in rare pharmacy. We serve people living with rare and devastating conditions who deserve white-glove care. At PANTHERx every day is rare disease day, but February 29th is particularly special as we join with the rare disease community to celebrate rare and spread awareness for rare disease.
Lucía es una niña de nueve años y tiene mastocitosis desde que nació. Actualmente está tomando un tratamiento nuevo inmunosupresor y está muchísimo mejor. Ha ganado en calidad de vida.
Beach Organizer Training 2
Urban Paradise Guild at Hands Across the Sand Miami Beach
#JoinHands #NoKXL
Urban Paradise Guild at Hands Across the Sand on 5/17/2014 (RODRIGO GAYA for URBAN PARADISE GUILD)
SACE organized a Hands Across the Sand event for the Charleston area at Folly Beach, SC on May 18, 2013. This was one of over 100 similar gatherings around the world, sending the message "NO" to offshore drilling and risky fossil fuels and "YES" to clean energy. More information at blog.cleanenergy.org/2013/05/23/37-southeastern-communiti...
SACE organized a Hands Across the Sand event for the Charleston area at Folly Beach, SC on May 18, 2013. This was one of over 100 similar gatherings around the world, sending the message "NO" to offshore drilling and risky fossil fuels and "YES" to clean energy. More information at blog.cleanenergy.org/2013/05/23/37-southeastern-communiti...
Başkent University, Faculty of Health Sciences, The department of Social Work organized Rare Disease Day activities in Ankara.
You can siblings in photo Merve & Cemre who have Behcet's Disease both
This photo shows staff and students from the John Walton Muscular Dystrophy Research Centre in Newcastle, UK commemorating Rare Disease Day 2020.
Τα παει αρκετα καλα η Χρυσοβαλαντου μας δυσκολος τυπος αλλα προσπαθει πολυ Sma type1 ειναι εχει τραχειοστομο και αναπνευστηρα απο 17 μηνων τωρα με το Spinranza εχουμε βγαλει τον αναπνευστηρα μπορει και μιλαει ευχομαι για καλυτερα αποτελεσματα και θεραπειες. πλεον τον Μαρτιο θα γινει 7 ετων.
SACE organized a Hands Across the Sand event for the Charleston area at Folly Beach, SC on May 18, 2013. This was one of over 100 similar gatherings around the world, sending the message "NO" to offshore drilling and risky fossil fuels and "YES" to clean energy. More information at blog.cleanenergy.org/2013/05/23/37-southeastern-communiti...
I live with several chronic pain illnesses and a few of them are RARE. The worst is CRPS or Complex Regional Pain Syndrome. I also live with EDS type 4-vascular. I am a survivor and volunteer as an Advocate and an Ambassador for the US Pain Foundation. I recently was appointed to the Board of Directors and I'm very excited to be able to make a difference and help others who are also in pain and RARE.
Nous partageons notre soutien à tous les malades touchés comme nous par une maladie rare...
Nous sommes 3 sous le même toit à vivre et cohabiter avec Ehlers Danlos...
Başkent University, Faculty of Health Sciences, The department of Social Work organized Rare Disease Day activities in Ankara. You can see the academic staff in photo (Arzu, Merve, Seda)
Hands Across the Sand gathering at Folly Beach, SC on August 4, 2012 to say "no" to offshore drilling and "yes" to clean energy. Photos courtesy of Foxworthy Studios (www.foxworthystudios.com).