View allAll Photos Tagged joinhands
I captured this picture of my son's hands this past summer after returning from the biennial Phelan-McDermid Syndrome Foundation Conference and Scientific Symposium. I was touched by the way his hands formed a heart with his Phelan-McDermid Syndrome awareness bracelet in the center.
My son is 7 years old and he has a diagnosis of Chromosome 22 Ring and Phelan-McDermid Syndrome. There are only about 800 diagnosed cases of Phelan-McDermid Syndrome (22q13 deletion) in the world; only about 11% of those 800 are known to have the Ring 22 type. In addition to those two syndromes,he also has a 1.5Mb duplication of 22q11.1, which I can not find any information about. These rare disorders have resulted in him also being diagnosed with autism, moderate intellectual disabilities, impulse control disorder, and attention deficit/hyperactivity disorder (ADHD).
While he has many delays, he has the biggest and most contagious smile. He is a loving little boy who will be mommy's best friend for life.
hands across the sand 2016, glenelg beach, adelaide, south australia
because BP has no right to risk the great australian bight!
BP - of deepwater horizon fame - proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world
#joinHANDS
#FightfortheBight
hands across the sand, an event organised by the wilderness society, south australia
the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'
semaphore foreshore reserve and beach, adelaide, south australia
#BP_BIGRISKS #joinHANDS
I went from DK to se Dr. Karen Louise Herbst at the University of Arizona, Tucson in January 2014, and as Jodie Jackson Jr. put it in his below-mentioned article: "Hearing “Dercum’s” was a relief for some if only because their condition finally had a name."
Danish Health and Medicines Authority are now looking into what specialized unit should be responsible for Dercum's disease which obviously is very rare.
Thanks to Dr. Herbst for being you and to Jodie Jackson Jr. for writing the article with this title:
“Dercum's disease: Giving a voice to those who suffer”
/Ala
hands across the sand 2018, semaphore beach, adelaide, south australia
because no oil company has the right to risk the great australian bight!
norwegian company statoil recently changed its name to equinor and promises to shift its operations towards clean energy production, but it still proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world
#JoinHands
#UnderwaterWilderness
#FightForTheBight
hands across the sand 2016, glenelg beach, adelaide, south australia
because BP has no right to risk the great australian bight!
BP - of deepwater horizon fame - proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world
#joinHANDS
#FightfortheBight
Fotografía tomada en la Celebración del Día Mundial de las Enfermedades Raras (28 febrero de 2014), Estadio Pascual Guerrero, Cali, Colombia. Evento realizado por la Alianza entre Secretaría de Salud de Cali, Red Valle Enfermedades Raras (EERR), Centro de Investigaciones en Anomalías Congénitas y EERR: CIACER, Fundación Valle del Lili, Universidad ICESI, FECOER, Fundación IDEAL, Grupo S.E.D.Colombia, Fundación CroniCare y Comfandi.
Family and friends of CQ diagnosed with a rare disease NOMID showing their solidarity to all patients with rare diseases. Taken at CQ sister birthday celebration.
I'm cat (on the right) I have ehlers danlos type 3. My gf steph is on the photo too and she's great and helps me lots. Ehlers danlos sucks but I won't let it rule my life x
hands across the sand, an event organised by the wilderness society, south australia
the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'
semaphore foreshore reserve and beach, adelaide, south australia
#BP_BIGRISKS
#joinHANDS
Ataxia South Wales is proud the the Welsh Chocolate farm is involved in awareness of this important day.
Genevieve Halloway (left in green jacket) brought Hands Across the Sand to Morro Bay CA. Mike Phares (right front) Surfrider, Solarponics) helped organize event.
People from across the world in over 700 locations joined hands to say no to offshore oil drilling and yes to clean energy and renewables. www.handsacrossthesand.com/
This is my daughter Gracie! She was diagnosed with Urticaria Pigmentosa when she was 3 months old. She is 4 yrs old now and she's out little superhero!! People ask us almost daily what's wrong with her, does and have chicken pox? Or people totally avoid and stare. We have been kicked out of places all because they think she's contagious. All that's contagious with her is her amazing smile!
This is a picture my son Matt made of his own hands before he passed from SUDEP on 9-13-13 at 17 yrs. He lived with LGS.
I imagined him raising his hands in support of Rare disease day in spirit for those still fighting!
Participants at the Rare Disease Day 2014
Hands for Better Care. -Paediatric department at Sanski Most General Hospital
Patients, family members, physicians, researchers, students and citizens together to better care at the Faculty of Medicine and Surgery | AOU Policlinico of Modena in collaboration with the Center for Rare Lung Diseases, and the Association of Donor organs, tissues and cells.
hands across the sand 2016, glenelg beach, adelaide, south australia
because BP has no right to risk the great australian bight!
BP - of deepwater horizon fame - proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world
#joinHANDS
#FightfortheBight
La Sezione di Scandicci della Misericordia di Lastra a Signa per trisomia 9 a mosaicoe per la giornata delle malattie rare
the rise up singing choir sings the crowd out onto the dunes
hands across the sand 2018, semaphore beach, adelaide, south australia
because no oil company has the right to risk the great australian bight!
norwegian company statoil recently changed its name to equinor and promises to shift its operations towards clean energy production, but it still proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world
#joinHands
#UnderwaterWilderness
#FightForTheBight
hands across the sand 2016, glenelg beach, adelaide, south australia
because BP has no right to risk the great australian bight!
BP - of deepwater horizon fame - proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world
#joinHANDS
#FightfortheBight
Our children Colton and Ryleigh were diagnosed with Cerebral Cavernous Malformation. He has 4 bleeds and she has 2. Every day is a blessing with the both of them.
Brief testimony with your photo: Novartis is a proud supporter of Rare Disease Day and is committed to on-going research in rare diseases. We are working to overcome the acute challenges posed by these diseases through a pioneering focus on science and greatest unmet need. Our vision is to develop new treatments that improve patients’ lives.
Novartis supported Rare Disease Day 2013 by holding a special internal event, which included a talk from a patient, who told the story of how a rare disease has affected her life, plus an update on Novartis’ research strategy in rare diseases. The event was webcast live for all Novartis employees to watch around the world.
In Shire's office in Spain we RAISED AND JOINED OUR HANDS to show our solidarity with rare disease patients around the world!
Our purpose: to enable people with life-altering conditions to lead better lives.
hands across the sand, an event organised by the wilderness society, south australia
the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'
semaphore foreshore reserve and beach, adelaide, south australia
#BP_BIGRISKS #joinHANDS
I was dx'd in 2007 with Pulmonary Arterial Hypertension, I read online I had 2 years to live.... (The staff at the hospital when I was dx'd did not know this disease so no one wanted to talk to me about it) It wasn't until I started meeting others with this disease that I realized I had a chance, I am on 3 major meds that of course cause many other issues which make me take other meds but I am here many years later to say I have PAH, but it does not have ME!!
The MY Steve Irwin sails in to Port Adelaide as part of Operation Jeedara, the Great Australian Bight Alliance's campaign opposing BP's plans to drill in the Great Australian Bight.
#FightForTheBight
#OperationJeedara
hands across the sand 2016, glenelg beach, adelaide, south australia
because BP has no right to risk the great australian bight!
BP - of deepwater horizon fame - proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world
#joinHANDS
#FightfortheBight
greens mlc mark parnell photographs his wife - senator penny wright - in action
hands across the sand, an event organised by the wilderness society, south australia
the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'
semaphore foreshore reserve and beach, adelaide, south australia
#BP_BIGRISKS #joinHANDS
Djeca, vaspitači, nastavnici, roditelji, zdravstveni radnici...Zajedno smo jači... za bolju njegu...
Children, educators, teachers, parents, health workers ... We are stronger together ... for better care ...
This is my photo of my hand and those of my three under three years old children. We are and Ehlers-Danlos Syndrome family; I have EDS Hypermobility Type as does my partner. Our twins have it too and although he is very young to tell it looks to me that our one and a half year old son has it EDS too.
Flashmob sur la place de la Comédie avec nos mains colorées tendues vers le ciel, pour terminer la marche dans un geste commun, un geste joyeux, et aussi une photo en souvenir de cette journée exceptionnelle!!
hands across the sand 2016, glenelg beach, adelaide, south australia
because BP has no right to risk the great australian bight!
BP - of deepwater horizon fame - proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world
#joinHANDS
#FightfortheBight
wilderness society community coordinators coordinate the community!
hands across the sand 2018, semaphore beach, adelaide, south australia
because no oil company has the right to risk the great australian bight!
norwegian company statoil recently changed its name to equinor and promises to shift its operations towards clean energy production, but it still proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world
#joinHands
#UnderwaterWilderness
#FightForTheBight
hands across the sand 2018, semaphore beach, adelaide, south australia
because no oil company has the right to risk the great australian bight!
norwegian company statoil recently changed its name to equinor and promises to shift its operations towards clean energy production, but it still proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world
#joinHands
#UnderwaterWilderness
#FightForTheBight