View allAll Photos Tagged joinhands
Solenne is four years old and was diagnosed with Klippel-Feil Syndrome at the age of two. We advocate for research of KFS to ensure a pain-free future for Solenne!
My 16 year old son, Scott lives with rare disease everyday. Diagnosed in January 2015 he has been a trooper. We seek effective therapies and answers continuously.
I am 53 now and doing pretty well. My Facebook account is public if you wish to see other pictures. Mt diagnosis is in question as weather I have K-T or CLOVES Syndrome. I hope many others are inspired to never give up,,, patients, loved ones and all the medical people from the Dr.s to the nice folks that do the wash.
#ShowYourRare with the Rare disease community attending the Findacure Drug re purposing event
(collection via Ataxia and Me patient group)
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
the wilderness society's 'hands across the sand' event for 2015, highlighting public concern for the potentially disastrous consequences if a spill similar to the deepwater horizon oil-spill in the gulf of mexico was to happen in our waters, given that the company responsible - BP - is currently applying to drill in the great australian bight
glenelg beach, south australia, australia
#joinHands
#oilfreeseas
#oilspillsR4eva
Tal como o ano passado, a Nutricia responde ao desafio do Rare Disease Day e levanta as mãos para apoiar as pessoas com doenças raras em todo o mundo!
Day-by-day hand-in-hand :)
My workmates at Bethpage State Park in New York helping me raise awareness for 2017 Rare Disease Day. My granddaughter, Adalynn Grace, passed away on February 25, 2016 from ECCL. We honored her today and all those suffering from rare diseases and syndromes around the world.
Jährlich treffen sich die Lowe-Syndrom Familien aus Deutschland, Österreich und der Schweiz zum gemeinsamen Erfahrungsaustausch.
the wilderness society's 'hands across the sand' event for 2015, highlighting public concern for the potentially disastrous consequences if a spill similar to the deepwater horizon oil-spill in the gulf of mexico was to happen in our waters, given that the company responsible - BP - is currently applying to drill in the great australian bight
glenelg beach, south australia, australia
#joinHands
#oilfreeseas
#oilspillsR4eva
One of our Youth Group Members, Jordan, has Addison's Disease. Some of us also have other family members or friends with rare diseases. We've seen Jordan and the others have to deal with their conditions, and we want to show our support and raise awareness! Hands up!!
This is a photo of our family in support of rare disease day 2015. Our little boy Evangelos was diagnosed with JMML just before turning 1 year old with a mutation at the CBL gene later confirmed. JMML is a rare type of Leukemia cancer impact 1 to 2 children per million. He will be turning 3 in a couple of weeks!
Tutti i giocatori delle società di calcio ASD RUBALE, SC SCARSENAL, I NOBILI DI MONTEPULCIANO, AS ROSANO e delegazione dell'ALBERTA 72 in segno di contributo di vicinanza e solidarietà per celebrare la GIORNATA DELLE MALATTIE RARE 2017.
On 27 February in Sofia, Bulgaria, within the framework of Business Forum Pharma at the Radisson Hotel, the National Patients’ Organization and its members – organizations of rare diseases had organized an information campaign for Rare Diseases Day . Dr. Petar Moskov, Minister of Health, the Member of European Parliament Andrey Kovatchev, representatives of institutions, professional organizations and health care establishments in the country, medical doctors, representatives of the pharmaceutical industry took part in the forum.
Patients, family and sympathizers of the Belgian Pulmonary Hypertension Patient group are raising their hands for Rare Disease Day!
releasing hopes and prayers for our friends suffering with Chiari Malformation at the 2015 Conquer Chiari Walk Across America in Auburn, Massachusetts.
Meet Samuel, he was diagnosed with a rare genetic disorder called 16P11.2 he was also diagnosed with deletion material of chromosome 4.
the wilderness society's 'hands across the sand' event for 2015, highlighting public concern for the potentially disastrous consequences if a spill similar to the deepwater horizon oil-spill in the gulf of mexico was to happen in our waters, given that the company responsible - BP - is currently applying to drill in the great australian bight
glenelg beach, south australia, australia
#joinHands
#oilfreeseas
#oilspillsR4eva
The rare purple elephant Pongo went to schools in order to explain kids not to be affraid of rarity.
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 diagnosed with PH 3 years ago. This is a rare lung disease. I will not let it take the life out of me. PHighting for a cure!
Our event held on Friday, 28 Feb 2020 at Neo Soho - Jakarta, Indonesia.
There are many activities can we organize, like Talkshow "I support Rare Disease Day", performance by GSTAR (Down Syndrome warriors) and going to Aquarium Jakarta at Neo Soho Mall.
We are really happy to participate in this day, and for that, we prepared a night bike tour with families, the Mexican Tuberous Sclerosis Association, the Yucatan Autism Association and the Cicloturixes, a cycling community in Yucatan, Mexico. This is the first time that we get around 250 colorful hands up!!! Amazing day!!! :D
Associates from across the Novartis UK business made creative contributions towards our 'Raise and join hands' collage in support of those affected by rare diseases in the UK.
the wilderness society's 'hands across the sand' event for 2015, highlighting public concern for the potentially disastrous consequences if a spill similar to the deepwater horizon oil-spill in the gulf of mexico was to happen in our waters, given that the company responsible - BP - is currently applying to drill in the great australian bight
glenelg beach, south australia, australia
#joinHands
#oilfreeseas
#oilspillsR4eva
At the Rare Disease Day Awareness Walk supporting @smile_with_sam
I was here with Em Ray today and her son Sam who has a rare condition called Angelman’s Syndrome. Today was the first step for me as a mother to make my son understand of what the word ‘inclusion’ means and how we are all unique and different in our own ways. I was so proud to see him participate in the Awareness Walk in support of the Rare Disease Day and broadening his understanding of the world.
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).
facepainting, 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
It was great to see our Team turn up and put their hands in the air as a sign of Solidarity. We welcome the opportunity to raise awareness of Rare Diseases.
the wilderness society's 'hands across the sand' event for 2015, highlighting public concern for the potentially disastrous consequences if a spill similar to the deepwater horizon oil-spill in the gulf of mexico was to happen in our waters, given that the company responsible - BP - is currently applying to drill in the great australian bight
glenelg beach, south australia, australia
#joinHANDS
#oilfreeseas
#oilspillsR4eva
BRPH, an international architecture and engineering firm, organized a fundraiser and awareness luncheon at their Melbourne, Florida headquarters to provide employees with information regarding rare diseases that they likely wouldn’t receive in their normal day-to-day lives. The intent was to join in on Rare Disease Day and raise awareness of the diseases affecting the loved ones of BRPH employees. Providing lunch for purchase offered a small fundraiser to benefit an organization supporting Rare Disease Day.
the wilderness society's 'hands across the sand' event for 2015, highlighting public concern for the potentially disastrous consequences if a spill similar to the deepwater horizon oil-spill in the gulf of mexico was to happen in our waters, given that the company responsible - BP - is currently applying to drill in the great australian bight
glenelg beach, south australia, australia
#joinHands
#oilfreeseas
#oilspillsR4eva