Learn more about the project and how to send us your Handprints Across America® Submission here.
Ian is 10 & has Pitt Hopkins Syndrome (PTHS). PTHS is characterized by developmental delays, gastrointestinal issues, often times lack of speech, hyperventilation/apnea, seizures, and distcintive facial features. Learn more at www.pitthopkins.org.
I lost my best friend last year from complications of FMF. Her name was Dima Ghandour , she served in the US army and I am wearing her t-shirt during my run. We ran the 10k in the Dubai Marathon , we hope to be bigger and louder next year .
Theresa from Wisconsin wants you to join her in using your voice to make rare diseases known and to help others HEAR the need for funding research and treatments. Theresa lives with Klippel-Feil Syndrome. There is no research being done on this disease.
This is Miles shortly before his diagnosis of MCAHS2, caused by a mutation in the PIGA gene. This photo was taken July 4, 2015, three days after his 2nd birthday. He has an unaffected fraternal twin brother and an 8 year old sis. Hope he walks soon!
This is me, one of the faces of adiposis dolorosa. One of the rarest of the rare and most painful of painful. Described as a fat disorder that effects mainly women. Specialists are limited and booked solid for people desperately seeking help.
Extending this to paw prints across America, Service Dog Cassius supports Moebius syndrome and rare disorders.
In 2015 myself and Landon were diagnosed with EDS type 3, Mattie was diagnosed with JHS until she can be officially diagnosed with EDS when she is 5. We are ZEBRAs!!!
WAGR syndrome has taught us to live for every day and enjoy the beauty all around us, like the rare and stunning Lake Tahoe!
Both of my children have Eosinophilic Disease (Eosinophilic Esophagitis).
Sadie is 16 months old and has type 3/4 Mild Osteogensis Imperfecta.
I am a 32 year old raising awareness for others like me living with Essential Thrombocythemia (ET). I will continue to stay positive and hopeful there will be speedier diagnosis, better treatments and cures in the near future for all!
Our lab celebrates Rare Disease Day 2016 for the 50,000 Americans living with tuberous sclerosis complex (TSC). We feel humbled through our interactions with the TSC community and are honored to participate in rare disease research!
Evalina Gonzalez is my niece whom passed away from a rare disease called Krabbe Disease. Most babies pass by their 2nd birthday. She passed the day after hers. Evalina fought her disease and now we fight in her honor.#krabbeawareness
Ethan was born premature with rare genetic kidney disease - Bartter syndrome.His body can't hold fluids and wasting electrolytes.He suffers from numerous complications and seeing 8 specialist. Ethan is advocate for his disease and excellent golfer.
Davion Breaux was born with a rare skin disorder called Epidermolysis Bullosa. While Davion suffers from the effects of EB every day, he wants to help raise awareness about EB because not many people know what it is.
Every moment of every day, I battle CRPS (complex regional pain syndrome). Every day, I hope for a cure & better treatments, & am thankful for much needed awareness for rare diseases on Rare Disease Day.
The DTM Foundation is in remembrance of Megan Dean and Evline Thomas, two beautiful baby girls who had Hurlers Syndrome. Our goal is to fill the spiritual, emotional & physical needs of families with medically fragile children in NC hospitals.
Samuel lives with FPIES. He is ready to join hands in awareness about a rare food allergy called Food Protein Induced Enterocolitis Syndrome. You can learn more about FPIES here: http://fpiesfoundation.org/
I (Brittany) was born with Chronic Intestinal Pseudo Obstruction Disease, leaving me TPN dependent. Although life with CIPO is filled with lots of pain and is often difficult, it's worth it. I am so lucky to have the love of my life by my side.
Abby is 11 years old and has Sanfilippo Syndrome Type IIIA. She was diagnosed with the Lysosomal Storage Disorder at 8 years old. There is no treatment or cure but we are working hard with other families to change the fate of affected children. 💜
The Strongbridge Biopharma team is passionate about making a positive difference in the lives of patients with rare diseases! The company gathered to show support for Rare Disease Day and take part in Handprints Across America.
CADASIL is a rare genetic hereditary disease causing neurological disorders: migraines, depression, vertigo, stroke, dementia. There is no cure. Research and awareness are needed. To all who are Rare: "Don't let the bastards grind you down"
Jessie McQuillen and her mom Debbie Beaver were born with HHT Hereditary Hemorrhagic Telangiectasia. She lost her mom in 2011 to HHT but now raises awareness to prevent others from doing the same. www.curehht.org
After 14 years of being together Randall honors his wife with Sturge Weber Syndrome with a simple kiss.
For the 2nd year Heroic Inner Kids, a nonprofit of cosplayers, gathered to raise awareness about Rare Disease Day. With special attendants having Sturge Weber Syndrome, Myotonic Dystrophy and Pfeifer-Weber-Christian disease it was a beautinful night.
The Vencore Health Analytics team provides predictive analytic solutions to identify undiagnosed or misdiagnosed rare disease patient clusters. The team has joined together to show their support for all rare disease patients.
Phoebe is 5 year old, She remains an immunocompromised, undiagnosed mystery. Without a diagnosis, there is no treatment plan. We will keep fighting until we have a diagnosis and to raise awareness for all Rare Diseases!
I am grateful for Rare Disease Day because I am 1 of the 30 million Americans living with a rare disease. My diagnosis Cystinuria. RDD helps us shed light on the research, diagnostic, & treatment limitations we face. It allows our voices to be heard.
As a team member of BDI Pharma, I assist patients with rare diseases locate resources to help them through their journey. I am posting this to raise awareness and show my support of Rare Disease Day.
Our inclusive program serves children with special needs,a number of which have rare disorders, alongside their peers. We will be celebrating Feb. 29 by decorating the provided coloring sheet and having colorful handprint jello jigglers for snack.
Providing compassionate care is what the Greenwood Genetic Center is all about, and we're proud to support all of those impacted by a rare disease - not only on February 29th, but everyday!
Beau has Opitz G Syndrome. He is our little fighter and superhero in disguise.
4 Years now since Cassandra was diagnosed with NOMID (Neonatal Onset Multisystem Inflammatory Dissase). There is no cure yet for NOMID but there is treatment that help manage her symptoms.
Elizabeth has a rare food allergy. She has FPIES: Food Protein Induced-Enterocolitis Syndrome.
Zachary has Aarskog Syndrome. Aarskog syndrome affects a person's height, muscles, skeleton, genitals, & appearance of the face, In relation, Zachary also has Metatarsus adductus, Hyperopia, Astigmatism, Bilateral amblyopia and Autism.
I celebrate Rare Disease Day because I was diagnosed with post traumatic Syringomyelia in May of 2011. This disease caused irreversible progressive damages to my central and autonomic nervous systems. SM has no cure or recovery. I post for hope!
Keck Graduate Institute with Dr. Ian Phillips, Director, Center for Rare Disease Therapies at their annual Rare Disease Day at KGI. Dr. Phillips is holding NORD banner I held on the summit of Everest and at the finish line of the Iditarod. I have WG.
My son, Pip, is 25 months old and is suspected of having mitochondrial disease. He has areas of leukoencephalopathy on his brain, FPIES, and motor delays. Despite his setbacks, he's one determined little guy who is full of enthusiasm for life.
My daughter Mercy suffers from Cyclic Vomiting Syndrome, motor tics, and peripheral neuropathy. It is suspected that these all stem from a nuclear mitochondrial disease. When she isn't feeling sick, Mercy loves embracing all of life.
We are supporting Rare Disease Day in memory and in honor of our sweet baby boy, Lukas. Lukas was diagnosed with a rare, genetic syndrome called Shwachman-Diamond syndrome shortly after birth. Fly high Super Lukas! We love you!
This is my daughter & I taking a break from walking a nature trail in Carthage, Missouri. We're celebrating because I have several rare disorders, one of which I passed onto her, but I'm still alive & I get to be her's and my son, Nikolai's, mother.
This is the last school photo taken before being diagnosed with a rare childhood cancer, Transitional Liver Cell Tumor. He died less than 2 years later. We donated his tumors to research, 1 of 3 databank bio-specimens in the entire world for his type.
Brian and his good buddy Django today February 29, 2016. Brian has a rare disease, Dercums Syndrome which is an adipose tissue disorder that does not have a cure nor how it is caused.
February 19, I celebrated my eighteen year post-bone marrow transplant anniversary. The transplant continues to be 100% successful in stopping progression of a very rare form of Krabbe Disease. I volunteer & advocate for Krabbe &
After Arianna was diagnosed with Infantile Spasms at 5 ½ months, we have learned the true meaning of life and living it to the fullest.
This is Emma Barnett's immediate family, her biggest support group. Also in this picture is my husband and donor for my brother who has been battling with kidney disease since I was 6. My father passed away when I was 7. Now 44, we are blessed to have each other.
HomeServe USA employees in Norwalk, CT and Chattanooga, TN gathered to show support for Rare Disease Day. We do this in honor of all patients and families, including some of our own employees, who are affected by rare diseases.
I am Sally's daughter, Cathy, to her left. Cathy was diagnosed with Corticobasal Degeneration, a rare neurodegenerative disorder that greatly impacts movement, speech and swallowing. Along with her speech pathologist, Heidi, we are celebrating her day!
Supporting my friend Cara Larson, who has a son; Charlie who has a Rare Disease.
Emily is a extraordinary example of not allowing dreams to die with the diagnosis of a rare condition -- Sotos Syndrome. Through much hard work, grit, and resilience she earned her BS with honors, and is pictured at work day's end from her new job!
Drs. Anthony Nesburn and Cristina Kenney, ophthalmologists on the faculty at Univ. of California - Irvine have been leaders of the National Keratoconus Foundation since its inception more than 20 years ago.
Diagnosed with nephrotic syndrome nearly seven years ago, but we don't let it slow us down one bit! Let's find a cure!
Our team at Invitae, a genetic testing lab in San Francisco, created "handprint boards" in honor of Rare Disease Day 2016. Everyone in the office put their handprint on a board as a sign of dedication to the patients and families we serve each day.
In, this photo I am sitting.This is a normal thing.Except, my heart beat in this picture might range from 130 bpm and higher. My blood pressure drops and/or stays the same. I suffer from POT Syndrome.
Today, I celebrate my son Liam's victories over his diagnosis of Allan Herndon Dudley syndrome. I also recognize the patients and families of those battling against a rare form of disease or disorder.
David lives with the very painful and incurable Suicide Disease, but he doesn't let it get him down. He holds up his hands so people will remember HOPE=Hold On Pain Ends.We may have to walk this journey, but we do not have to walk it alone.
We are celebrating our friend Cara's son, Charlie!
Dylan is 10years old & was diagnosed with a Rare Neurological Movement Disorder in 2015 & is now being seen at John Hopkins. We don't have a name for his disease so help us advocate & support Dylan's Rare Disease. Http://www.welcometodylansjourney.com