Die DIG PKU vor dem Reichstahsgebäude in Berlin.

Pitt Hopkins Families raise and join hands in Rome, Italy

We all raised our hands today, at the IGMJM (Oporto, Portugal)for all the patients, friends and families with rare diseases all over the world. We shall keep working to improve the diagnostic, treat and help understanding these diseases.

Contributo di solidarietà alla RDD 2017 - Per Sonia e la Trisomia 9 a mosaico - durante la Festa Vicariale di Carnevale con il gruppo dopo Cresima di Ponte a Greve Firenze. Italia

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

hands across the sand

#BP_BIGRISKS

#joinHANDS

This is just one of the teams working to help patients at Bristol-Myers Squibb.

My daughter who is now 7 was born with Hirschsprung disease and lost her large intestine. She now lives with an ileostomy and nothing slows her down! She is rare and strong

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

Fin de fiesta del V Congreso Internacional de Glucogenosis 2014 celebrado en Barcelona, más de 150 personas acudimos al Tibidabo por la Gluco!! Fué un día muy especial y cargado de emociones!! www.glucogenosis.org ''Juntos somos más fuertes!!

Colleagues joining hands against rare diseases

VIPSONLUS - Università degli Studi di SASSARI

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

hands across the sand

#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

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

hands across the sand

#BP_BIGRISKS

#joinHANDS

FIRST, The Foundation for Ichthyosis & Related Skin Types, Inc.® is proud to join hands and show our support and solidarity for all those living with rare disease!

No matter how different we are, small, tall, long-haired, short-haired, healthy or sick, hand-in-hand, we can grow and eventually reach the star (in our case, the Sun :)). As you can see, hands on both ends of the chain are free and raised. All together it may symbolize the awareness that, on one side there is an indefinite way of growing, and on the other, a constant pull from the bottom to the top, so everybody who is at the bottom now can be on the top in the future.

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

hands across the sand

#BP_BIGRISKS

#joinHANDS

WAGR syndrome is an extremely rare disorder, with fewer than 500 cases identified. But WAGR families from all over the globe - Australia, Canada, England, Ireland, Japan, Sweden, and the United States - celebrated RARE DISEASE DAY 2015, raising awareness in their communities, at their state capitals, at national conferences, and everywhere on social media. Alone we are rare, together we are #WAGRstrong!

Three years and counting!

Although pulmonary arterial hypertension was discovered in 1891, there were no known treatments for the disease until 1994. The prognosis and life expectancy for a patient with pulmonary hypertension was around 3 years and it took an average of 2 years to accurately diagnose a patient.

While living with a rare disease is often difficult it has not been lost to me that I am LIVING with a rare disease. Things would have been different if I had not moved five minute from a hospital that has a PH specialist and lab. So ”I SUPPORT Rare Disease Day”

Creación de una manta solidaria por y para las enfermedades raras.

CSL Behring supports Rare Disease Day. This photo is sent from Parkville, Australia.

IRCCS "EUGENIO MEDEA" BRINDISI Supports Rare Disease Day!

2 years old Isovaleric Acidemia

A Nutricia apoia as pessoas com doenças raras em todo o mundo!

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

hands across the sand

#BP_BIGRISKS

#joinHANDS

All the class were happy to give their support to Rare Diseases Day. My grandson, who lives in Australia, has PWS so it is great that this day will help people understand the difficulties some people encounter,

The Pulmonary Hypertension Association South Africa (PHSA) was founded by patients for patients. We are a source of support, connection and hope to PH patients and their loved ones. The voice of the PH community is built on the personal stories of patients, caregivers, family, friends and medical professionals. Each of these stories is a powerful tool in educating and raising awareness amongst the general public about PH.

PHSA is a young upcoming association with many ambitious projects in the pipeline, a keen interest in innovation and the potential of IT technology and social media. It is open to any new projects and ideas which could help to achieve its goals

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

hands across the sand

#BP_BIGRISKS #joinHANDS

face painting stall, hands across the sand - an event organised by the wilderness society, south australia

the rally called 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

hands across the sand

#BP_BIGRISKS #joinHANDS

Rare deseases are part of my son's life, he is managing them very well! Craniosynostosis, Arnold-Chiari and Klippel-Feil syndrome! 👍👍👍✌️✌️✌️💪💪💪

Our daughter Ivy Barsley, age 6 has a rare genetic syndrome, Partial Trisomy 4 Partial Monosomy 10. She is an amazing little girl.

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

Beni (3yrs., Wolf Hirschhorn Syndrome) and his class mates of "Glitzersterne" at Chinderstern day nursery Adliswil, Zurich, Switzerland, created this artwork during their 2015 Rare Disease Day event on Feb. 27th.

Giacomo di Firenze per trisomia 9 a mosaico - giornata delle malattie rare 2015

Shire 300 MFG Joins hands to help support our patients with rare diseases!

CSL Behring: Employees from the CSL Behring Commercial Team in Japan(Shikoku Region)show their support of Rare Disease Day! CSL Behring is a biotherapies company committed to saving lives and improving the quality of life for people with rare and serious diseases worldwide.

CSL Behring : Employees from the CSL Behring Commercial team in Japan (Sendai Region) show their support of Rare Disease Day ! CSL Behring is a biotherapies company committed to saving lives and improving the quality of life for people with rare and serious diseases worldwide.

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

hands across the sand

#BP_BIGRISKS #joinHANDS

"Hands Around the Spirit Camp," National Day of Action to Say #NoKXL, May 17, 2014, in Ideal, South Dakota. Photo by Kernit Grimshaw / Bold Nebraska

#NoKXL, #JoinHANDS

#reConnectQuilt at #FigmentFestival2015 on #GovernorsIsland

- DAY 2 #RainbowQuilt #TentTheater #reConnect

#makesomething #JoinHands #webelongtoeachother #FigmentFestival #Figment

#people

Celebrating in San Francisco.

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

hands across the sand

#BP_BIGRISKS

#joinHANDS

The MY Steve Irwin sails in to Port Adelaide as part of Operation Jeedara, the Great Australian Bight Alliance's campaign oppising BP's plans to drill in the Great Australian Bight.

#FightForTheBight

We are raising hands and support patients and their families with rare diseases

Amici di Sonia - trisomia 9 a mosaico - per le malattie rare

Happy Day with Tony in Burnham on Crouch 2012 - not our Porsche