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Countdown to Rare Disease Day!

Handprints Across America Gallery

CBS News put together a great Rare Disease Day spread that includes photos from the Handprints Across America gallery. Great support for the main goal of the day, which is education and awareness! View the article >

Learn more about the project and how to participate here.

Tambra M and
Tambra M and "Charlie" from AZ suffering from Dercums Disease/Adiposa Delorosa
Student Council Members at Spencer Loomis Elementary School in IL
Student Council Members at Spencer Loomis Elementary School in IL
Amirah after her IVIG treatment for CIDP at the Childrens Hospital Of Philadelphia
Amirah after her IVIG treatment for CIDP at the Childrens Hospital Of Philadelphia
Kyndell S from TN battling fructose 1 6 bisphosphatase enzyme deficiency
Kyndell S from TN battling fructose 1 6 bisphosphatase enzyme deficiency
Heather K from KS has Hermansky-Pudlak Syndrome
Heather K from KS has Hermansky-Pudlak Syndrome
Nicki S, TN, supports her friend with a rare liver disease
Nicki S, TN, supports her friend with a rare liver disease
Jenifer P from MA living with CIPD
Jenifer P from MA living with CIPD
Allison in Seattle, WA raising awareness for Intracranial Hypertension.
Allison in Seattle, WA raising awareness for Intracranial Hypertension.
Jennifer in MD an Adult with phenylketonuria (PKU), a testimony to the power of the phe-restricted diet.
Jennifer in MD an Adult with phenylketonuria (PKU), a testimony to the power of the phe-restricted diet.
Gabriel in Defiance, OH raising awareness for Hermansky Pudlak Syndrome.
Gabriel in Defiance, OH raising awareness for Hermansky Pudlak Syndrome.
Gabriella at Child Life Therapy raising awareness for hypophosphatemic rickets.
Gabriella at Child Life Therapy raising awareness for hypophosphatemic rickets.
Connor is 3.5 years old and is living with Prader-Willi Syndrome in MA.
Connor is 3.5 years old and is living with Prader-Willi Syndrome in MA.
Kimberly, 26, who has NBIA, in San Diego with two nurses from Rady Children's Hospital
Kimberly, 26, who has NBIA, in San Diego with two nurses from Rady Children's Hospital
3 Words that Describe Trevor (in CO) are Couragous, Strong & Determined
3 Words that Describe Trevor (in CO) are Couragous, Strong & Determined
Jenna (patient with rare disease DDD) in Portland, Oregon
Jenna (patient with rare disease DDD) in Portland, Oregon
Diane and Gracie the dog in CO, who help hurting people and animals while raising awareness of rare diseases.
Diane and Gracie the dog in CO, who help hurting people and animals while raising awareness of rare diseases.
Skylar in KY raising awareness for Geroderma Osteodysplastica.
Skylar in KY raising awareness for Geroderma Osteodysplastica.
Gabby in NC is 10.5 yrs old she was born with a rare chromosome duplication called trisomy 14 mosiac.
Gabby in NC is 10.5 yrs old she was born with a rare chromosome duplication called trisomy 14 mosiac.
Cynthia in Jacksonville Landing, Florida, to increase awareness of Cutaneous T-Cell Lymphoma.
Cynthia in Jacksonville Landing, Florida, to increase awareness of Cutaneous T-Cell Lymphoma.
Mike in NJ raising awareness for Pompe Disease.
Mike in NJ raising

awareness for Pompe Disease.

Xavier has Schinzel-Giedion syndrome (1 of 50 children ever diagnosed).
Xavier has Schinzel-Giedion syndrome

(1 of 50 children ever diagnosed).

Laura in Alaska said,
Laura in Alaska said, "Help cure Primary Hyperoxaluria Type 1 for my son Matthew!"
Mitchell is blind from CRB1-LCA, a degenerative retinal disease. One of Mitchell's favorite places is the beach!
Mitchell is blind from CRB1-LCA, a degenerative retinal disease. One of Mitchell's favorite places is the beach!
Cindy at the 300-mile Northern Lights Sled Dog Race, which qualified her for running in the 1000-mile Alaskan Iditarod Sled Dog Race
Cindy at the 300-mile Northern Lights Sled Dog Race, which qualified her for running in the 1000-mile Alaskan Iditarod Sled Dog Race
Michael is blind due to CRB1-LCA degenerative retinal disease. Michael tackles blindness everyday, on and off the football field!
Michael is blind due to CRB1-LCA degenerative retinal disease. Michael tackles blindness everyday, on and off the football field!
Cathy in IN
Cathy in IN is living with CVID/Hypogammaglobulinemia and Lupus, and would like to thank all the blood/plasma donors who make my weekly infusions possible
Nater in FL
~POMC Island~ One boy, an Ocean of Friends~
Clifford and Deb in WI
Clifford and Deb in WI, raising awareness for Pompe disease, estimated to effect about one in every forty thousand live births world wide.
Mary and Mel in KS
Mary and Mel in KS, honoring their two adult children with Primary Hyperoxaluria
Theresa from WI
Theresa from WI, raising a hand for awareness of Klippel Feil Syndrome, and all rare diseases
Kayce in NC
Kayce in NC, raising awareness for Familial Partial Lipodystrophy Dunnigan Syndrome (FLPD)
Joan in VA
Joan in VA, winning against Scleroderma.
Asia in MD
Asia in MD praying In memory of her mother who died from B.O.O.P
Josefina in LA
Josefina, who has been touched by the family members with rare diseases of her human friend, is an ally for all of those who suffer in silence from little-known ills.
Karenin TX
Karen staying positive and spreading awareness of Pompe Disease.
The Perry family and Karen in NY
The Perry family and Karen in NY, who are hoping for a cure for PSP.
Jordan in Melbourne
Jordan suffers from a rare genetic condition called PKAN.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Betsy, Jim & Jeannette.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Betsy, Jim & Jeannette.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Bob, Ken, Sarah and Patsy.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Bob, Ken, Sarah and Patsy.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Doug, Rosa, Sally and Mary Jo.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Doug, Rosa, Sally and Mary Jo.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Zerbin, Lora and Nina.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Zerbin, Lora and Nina.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Ashley, Denise, Bob, Pat, Kathleen, and Frederick.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Ashley, Denise, Bob, Pat, Kathleen, and Frederick.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Sara, George and Martha.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Sara, George and Martha.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Wendy, Teresa, Gidget, Pam, and Donna.
Midlands SC Palmetto PHriends Pulmonary Hypertension patients, families, friends members: Wendy, Teresa, Gidget, Pam, and Donna.
Tina, raising awareness and showing support!
Tina, raising awareness and showing support!
Amanda is raising awareness for Pompe Disease.
Amanda is raising awareness for Pompe Disease.
Skylar showing her support and raising awareness for Pompe Disease, which affects her sister.
Skylar showing her support and raising awareness for Pompe Disease, which affects her sister.
Jack suffers from Mastocytosis. He's getting ready to recognize Rare Disease Day 2013!
Jack suffers from Mastocytosis. He's getting ready to recognize Rare Disease Day 2013!
Gavin is diagnosed with Rubinstein-Taybi Syndrome. He is nonverbal, but knows how to make everyone feel very loved.
Gavin is diagnosed with Rubinstein-Taybi Syndrome. He is nonverbal, but knows how to make everyone feel very loved.
Matthew supporting his little sister Lauren in raising awareness for Greig's Syndrome.
Matthew supporting his little sister Lauren in raising awareness for Greig's Syndrome.
Lorraine, living with Pulmonary Hypertension in the CSRA (Central Savannah River Area).
Lorraine, living with Pulmonary Hypertension in the CSRA (Central Savannah River Area).
Hollie was diagnosed with Intracranial Hypertension in 2000 and with Chiari Malformation in 2010.
Hollie was diagnosed with Intracranial Hypertension in 2000 and with Chiari Malformation in 2010.
Employees at Amicus Therapeutics Headquarters: At the Forefront of Therapies for Rare and Orphan Diseases
Employees at Amicus Therapeutics Headquarters: At the Forefront of Therapies for Rare and Orphan Diseases
Scientist and Staff at Amicus Therapeutics, San Diego Office
Scientist and Staff at Amicus Therapeutics, San Diego Office
Annika in WI has Dense Deposit Disease.
Annika in WI has Dense Deposit Disease.
Hi I'm Julie and I have Stevens - Johnson Syndrome!
Hi I'm Julie and I have Stevens - Johnson Syndrome!
Rare Disease Day awareness event at the Norman, Historic Train Depot in Oklahoma!
Rare Disease Day awareness event at the Norman, Historic Train Depot in Oklahoma!
Mark has Hereditary Spastic Paraplegia--(HSP)
Mark has Hereditary Spastic Paraplegia--(HSP)
Evan is a crisis counselor at PWSA (USA) in sunny Sarasota, FL
Evan is a crisis counselor at PWSA (USA) in sunny Sarasota, FL
CSL Behring: Employees from the headquarters in King of Prussia, PA, raise their hands in support of Rare Disease Day!
CSL Behring: Employees from the headquarters in King of Prussia, PA, raise their hands in support of Rare Disease Day!
CSL Behring: The Kankakee, IL, Executive Management Team raise their hands in support of Rare Disease Day!
CSL Behring: The Kankakee, IL, Executive Management Team raise their hands in support of Rare Disease Day!
CSL Behring: The Human Resources Team from the Kankakee, IL office, raise their hands in support of Rare Disease Day!
CSL Behring: The Human Resources Team from the Kankakee, IL office, raise their hands in support of Rare Disease Day!
Radene in CA has adhesive arachnoiditis, CRPS-type II & central pain syndrome. Her
Radene in CA has adhesive arachnoiditis, CRPS-type II & central pain syndrome. Her "Handprint" is joined with her award winning artwork "Pain-the Divided Soul" which was about her rare diseases.
Coach Foster's daughter, passed away from a unknown, rare disease. The Spaulding Boy's JV and Varsity team have been very supportive of coach Foster and the family.
Coach Foster's daughter, passed away from a unknown, rare disease. The Spaulding Boy's JV and Varsity team have been very supportive of coach Foster and the family.
Sondra T. and her son, John, from Denver, CO living with and raising awareness for Multpile Endocrine Neoplasia, type 2.
Sondra T. and her son, John, from Denver, CO living with and raising awareness for Multpile Endocrine Neoplasia, type 2.
Lorenzo dedicated this picture to Dr. Richard Smith and Dense Deposit Disease DDD
Lorenzo dedicated this picture to Dr. Richard Smith and Dense Deposit Disease DDD
Kiera in MI, age 7, living with CDKL5 Disorder
Kiera in MI, age 7, living with CDKL5 Disorder
Magglio in CA suffers from infantile onset Pompe Disease - he is 5 years old.
Magglio in CA suffers from infantile onset Pompe Disease - he is 5 years old.
CSL Behring/CSL Plasma: Employees at the CSL Plasma headquarters in Boca Raton, Florida
CSL Behring/CSL Plasma: Employees at the CSL Plasma headquarters in Boca Raton, Florida
CSL Behring/CSL Plasma: Employees at the CSL Plasma collection center in Duluth, MI
CSL Behring/CSL Plasma: Employees at the CSL Plasma collection center in Duluth, MI
CSL Behring/CSL Plasma: Employees at the CSL Plasma collection center in Lansing, MI show their support of Rare Disease Day!
CSL Behring/CSL Plasma: Employees at the CSL Plasma collection center in Lansing, MI show their support of Rare Disease Day!
CSL Behring/CSL Plasma: Employees at the CSL Plasma collection center in Mesquite, TX show their support of Rare Disease Day!
CSL Behring/CSL Plasma: Employees at the CSL Plasma collection center in Mesquite, TX show their support of Rare Disease Day!
CSL Behring/CSL Plasma: Employees at the CSL Plasma collection center in Norman, OK
CSL Behring/CSL Plasma: Employees at the CSL Plasma collection center in Norman, OK
CSL Behring/CSL Plasma: Employees at the CSL Plasma collection center in Oak Park, MI
CSL Behring/CSL Plasma: Employees at the CSL Plasma collection center in Oak Park, MI
Alexander & Gunner in NC both suffer from primary hyperoxaluria type 2.
Alexander & Gunner in NC both suffer from primary hyperoxaluria type 2.
HHT- Hereditary Hemorrhagic Teleangiectasia More Than a Nosebleed! Cathleen and Nicole show support and raise awareness!
HHT- Hereditary Hemorrhagic Teleangiectasia More Than a Nosebleed! Cathleen and Nicole show support and raise awareness!
Andrew, who has Cutaneous T-Cell Lymphoma (Folliculotropic MF), with the University of Pittsburgh political science students who give him a reason to keep fighting.
Andrew, who has Cutaneous T-Cell Lymphoma (Folliculotropic MF), with the University of Pittsburgh political science students who give him a reason to keep fighting.
FOR MY RARE DISEASE: Lambert-Eaton Myasthenic Syndrome
FOR MY RARE DISEASE: Lambert-Eaton Myasthenic Syndrome
The Siren Interactive Rare Disease Day Team in IL, raising awarness for Rare Disease Day!
The Siren Interactive Rare Disease Day Team in IL, raising awarness for Rare Disease Day!
Carter was born with FPIES.
Carter was born with FPIES.
NORD staff and representatives from patient organizations at a regional membership meeting in FL.
NORD staff and representatives from patient organizations at a regional membership meeting in FL.
Debbie, who has Stiff Person Syndrome, after completing a 5K run.
Debbie, who has Stiff Person Syndrome, after completing a 5K run.
Kim raising awareness for Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome
Kim raising awareness for Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome
Dave supports RDD for all people suffering with FSGS and Nephrotic Syndrome.
Dave supports RDD for all people suffering with FSGS and Nephrotic Syndrome.
Rachel, in support of awareness for two potentially debilitating kidney diseases, FSGS and Nephrotic Syndrome.
Rachel, in support of awareness for two potentially debilitating kidney diseases, FSGS and Nephrotic Syndrome.
Brittany in IL, who has been living with Chronic Intestinal Pseudo Obstruction for almost 28 years!
Brittany in IL, who has been living with Chronic Intestinal Pseudo Obstruction for almost 28 years!
Angelo suffers from PMG.
Angelo suffers from PMG.
Jami has a rare kidney disease, Dense Deposit Disease (DDD).
Jami has a rare kidney disease, Dense Deposit Disease (DDD).
Gracie has Food Protein-Induced Enterocolitis Syndrome
Gracie has Food Protein-Induced Enterocolitis Syndrome
Ryan has Hajdu-Cheney Syndrome
Ryan has Hajdu-Cheney Syndrome
Linda is raising awareness for mesothelioma
Linda is raising awareness for mesothelioma
Lauren is living with Hypomagnesmia with Secondary Hypocalcimia
Lauren is living with Hypomagnesmia with Secondary Hypocalcimia
Marie, Executive Director at the Cornelia de Lange Syndrome Foundation, gives a big thumbs up for Rare Disease Day and Hands Across America.
Marie, Executive Director at the Cornelia de Lange Syndrome Foundation, gives a big thumbs up for Rare Disease Day and Hands Across America.
Jules & Haleigh are showing their support. Haleigh has been diagnosed with Moyamoya.
Jules & Haleigh are showing their support. Haleigh has been diagnosed with Moyamoya.
Trinity (Chromosome 13q deletion) sitting on big brother Kaleb's lap with big sister Sydney
Trinity (Chromosome 13q deletion) sitting on big brother Kaleb's lap with big sister Sydney
Charlie is twelve years old, overcoming challenges of Hemophilia A
Charlie is twelve years old, overcoming challenges of Hemophilia A
Lexi is a carrier of Hemophilia A
Lexi is a carrier of Hemophilia A
Sophie was diagnosed with Erythema Multiforme at age 18 months
Sophie was diagnosed with Erythema Multiforme at age 18 months
Parents of some RARE kids!
Parents of some RARE kids!
MACC Fund Center Nursing Staff supports RDD!
MACC Fund Center Nursing Staff supports RDD!
Dr. Myrvik in WI, psychologist supporting kids with rare diagnoses.
Dr. Myrvik in WI, psychologist supporting kids with rare diagnoses.
Comprehensive Center for Bleeding Disorders staff in WI supports RDD!
Comprehensive Center for Bleeding Disorders staff in WI supports RDD!
Mr. O'Connor, Principal, Nature Hill Intermediate School, supports his students with rare disorders.
Mr. O'Connor, Principal, Nature Hill Intermediate School, supports his students with rare disorders.
Caring for their students with rare diseases
Caring for their students with rare diseases
Marc is a MicroHealth developer & Rare Disease Day supporter
Marc is a MicroHealth developer & Rare Disease Day supporter
Charlie is 2 years old, and was born with Hirschsprung's Disease.
Charlie is 2 years old, and was born with Hirschsprung's Disease.
Laurie (mom) & Stephanie's sister, Lauren, raising funds in NH for the Stephanie Foster Rare Disease Educational Fund at NORD
Laurie (mom) & Stephanie's sister, Lauren, raising funds in NH for the Stephanie Foster Rare Disease Educational Fund at NORD
Rafi has mastocytosis. Here his class raises a hand for masto and supports their friend and Rare Disease Day
Rafi has mastocytosis. Here his class raises a hand for masto and supports their friend and Rare Disease Day
Members of NORD's DC Staff
Members of NORD's DC Staff
Members of NORD's Danbury, CT Staff
Members of NORD's Danbury, CT Staff
Founded in 2003, Caring Voice Coalition was formalized to meet the unmet needs among the orphan disease population.
Founded in 2003, Caring Voice Coalition was formalized to meet the unmet needs among the orphan disease population.
RDD is a Holiday in our house!
RDD is a Holiday in our house!
Sharing the love!
Sharing the love!
It's official! Texas has declared that the last day of February each year will now be
It's official! Texas has declared that the last day of February each year will now be "Rare Disease Day" in the Lone Star State!
D.J. has a rare kidney disease known as alport syndrome
D.J. has a rare kidney disease known as alport syndrome
Zach living with mastocytosis but not defined by it
Zach living with mastocytosis but not defined by it
Alice is 14 months old and has grain FPIES
Alice is 14 months old and has grain FPIES
Maddie lives every day to the fullest with neuropathic chronic intestinal pseudo obstruction.
Maddie lives every day to the fullest with neuropathic chronic intestinal pseudo obstruction.
Jenn supports RDD 2013!
Jenn supports RDD 2013!
Steve, with Hypoparathyroidism, supporting Rare Disease Day!
Steve, with Hypoparathyroidism, supporting Rare Disease Day!
Vickie and Lucy supporting RDD!
Vickie and Lucy supporting RDD!
Terri in FL trying to play the song
Terri in FL trying to play the song "Calcium" a song she wrote about HypoPARAthyroidism
This picture is for a wonderful husband and loving father who has been living with PNH since 2008.
This picture is for a wonderful husband and loving father who has been living with PNH since 2008.
Sean suffers from a brain malformation called Polymicrogyria (PMG).
Sean suffers from a brain malformation called Polymicrogyria (PMG).
Tara has hypoparathyroidism
Tara has hypoparathyroidism
This is Samuel who has Immune Thrombocytopenic Purpura and is raising hands for a great cause!
This is Samuel who has Immune Thrombocytopenic Purpura and is raising hands for a great cause!
Hayes lost his fight against Omenn Syndrome, to an underlying infection, after receiving a stem cell transplant.
Hayes lost his fight against Omenn Syndrome, to an underlying infection, after receiving a stem cell transplant.
Avery has chrom 13q deletion a rare genetic condition
Avery has chrom 13q deletion a rare genetic condition
Isaac has Glycogen Storage Disease type 9
Isaac has Glycogen Storage Disease type 9
Amy has Hypoparathyroidism
Amy has Hypoparathyroidism
Michael is 6 years old and was born with Recessive Dystrophic Epidermolysis Bullosa.
Michael is 6 years old and was born with Recessive Dystrophic Epidermolysis Bullosa.
Neuromyelitis Optica is a rare spectrum disease of the central nervous system
Neuromyelitis Optica is a rare spectrum disease of the central nervous system
Realogy supports their employees on Rare Disease Day and is active in sharing information and spreading the word!
Realogy supports their employees on Rare Disease Day and is active in sharing information and spreading the word!
Team NMO supporting RDD 2013
Team NMO supporting RDD 2013
ASD Healthcare employees in TX support Rare Disease Day
ASD Healthcare employees in TX support Rare Disease Day
Mis Pequenas Huellitas Day Care is supporting NMO Patients and Rare Disease Day.
Mis Pequenas Huellitas Day Care is supporting NMO Patients and Rare Disease Day.
Amanda has 2 rare diseases
Amanda has 2 rare diseases
Samantha has Idiopathic thrombocytopenic purpura
Samantha has Idiopathic thrombocytopenic purpura
Nicole has FPIES and MASTO
Nicole has FPIES and MASTO
Chloe has Chiari Malformation
Chloe has Chiari Malformation
Amy has hypoparathyroidism and thoracic endometriosis
Amy has hypoparathyroidism and thoracic endometriosis
Sophia has Mastocytosis
Sophia has Mastocytosis
I am celebrating Rare Disease Day both for my daughter who has Gaucher's Disease and for my friends who have hypoPARAthyroidism and achlorhydria.
I am celebrating Rare Disease Day both for my daughter who has Gaucher's Disease and for my friends who have hypoPARAthyroidism and achlorhydria.
I am celebrating Rare Disease Day because I have Gaucher's Disease.
I am celebrating Rare Disease Day because I have Gaucher's Disease.
Margaret supports her daughter who has four rare diseases.
Margaret supports her daughter who has four rare diseases.
We are proud to spread awareness and do all we can to help empower people with rare diseases!
The staff of the Osteogenesis Imperfecta Foundation is proud to spread awareness and do all we can to help empower people with rare diseases!
Julie has been diagnosed with Idiopathic Intracranial Hypertension and Chiari Malformation, so she is raising awareness for Rare Diseases!
Julie has been diagnosed with Idiopathic Intracranial Hypertension and Chiari Malformation, so she is raising awareness for Rare Diseases!
Raising awareness in support of her son Maximus who is living with Methylmalonic Acidemia Mut-.
Raising awareness in support of her son Maximus who is living with Methylmalonic Acidemia Mut-.
Arnn is supporting his buddy Maximus, who is living with Methylmalonic Acidemia Mut-
Arnn is supporting his buddy Maximus, who is living with Methylmalonic Acidemia Mut-
Jack, age 9, has Congenital Disorder of Glycolsylation -1A
Jack, age 9, has Congenital Disorder of Glycolsylation -1A
Braeden has 1P36 Deletion Syndrome and West Syndrome. We are stepping into rare day disease day with a smile!
Braeden has 1P36 Deletion Syndrome and West Syndrome. We are stepping into rare day disease day with a smile!
Members of The Chromosome 18 Registry and Research Society from Texas attending the Rare Disease Day Rally at the Capitol
Members of The Chromosome 18 Registry and Research Society from Texas attending the Rare Disease Day Rally at the Capitol
Members of the CADASIL Foundation attending the Rare Disease Day Texas Rally at the Capitol
Members of the CADASIL Foundation attending the Rare Disease Day Texas Rally at the Capitol
Students from Jefferson County-DuBois Area Vocational Technical Practical Nuring Program in PA, showing support for everyone suffering from a Rare Disease
Students from Jefferson County-DuBois Area Vocational Technical Practical Nuring Program in PA, showing support for everyone suffering from a Rare Disease
Thank you!
Thank you!" to the Rare Disease Day Texas Rally at the Capitol volunteers!
Sending out lots of love and support for all those suffering with, or family and friends attending to someone with a rare disease with hopes for research, funding and cures for these debilitating diseases.
Sending out lots of love and support for all those suffering with, or family and friends attending to someone with a rare disease with hopes for research, funding and cures for these debilitating diseases.
Raising awareness of rare vascular disease Fibromuscular Dysplasia (FMD)
Raising awareness of rare vascular disease Fibromuscular Dysplasia (FMD)
Ashlyn representing Congenital Insensitivity to Pain
Ashlyn representing Congenital Insensitivity to Pain
Raising awareness for Neuromyelitis Optica (for our Grandma/Mom)
Raising awareness for Neuromyelitis Optica (for our Grandma/Mom)
Lanier High School Health Science Institute students volunteered to support the Rare Disease Day Texas Rally at the Capitol
Lanier High School Health Science Institute students volunteered to support the Rare Disease Day Texas Rally at the Capitol
Supporters of the Chromosome 18 Registry and Research Society attended, volunteered, and even gave a wonderful speech at the Rare Disease Day Texas Rally at the Capitol
Supporters of the Chromosome 18 Registry and Research Society attended, volunteered, and even gave a wonderful speech at the Rare Disease Day Texas Rally at the Capitol
Audrey is 8 months old and has Freeman-Sheldon Syndrome, a rare form of arthrogryposis.
Audrey is 8 months old and has Freeman-Sheldon Syndrome, a rare form of arthrogryposis.
Hi my name is Tyler and I suffer from Langerhans Cell Histiocytosis. I am praying for all who suffer with a rare disease.
Hi my name is Tyler and I suffer from Langerhans Cell Histiocytosis. I am praying for all who suffer with a rare disease.
Davina in MA, showing support for the rare disease community!
Davina in MA, showing support for the rare disease community!
Evelyn is 6 years old (standing by the chalkboard) and was diagnosed with Muckle Wells Syndrome when she was 2.
Evelyn is 6 years old (standing by the chalkboard) and was diagnosed with Muckle Wells Syndrome when she was 2.
I have Pitt Hopkins Syndrome. Even though the name Pitt Hopkins does not define me, it does limit me. I am hoping that one day there will be a cure for my rare disease so that my mommy can finally hear my voice.
I have Pitt Hopkins Syndrome. Even though the name Pitt Hopkins does not define me, it does limit me. I am hoping that one day there will be a cure for my rare disease so that my mommy can finally hear my voice.
Cheyenne and Gregory showing support for their mother Andrea, who has Fibrosing Mediastinitis.
Cheyenne and Gregory showing support for their mother Andrea, who has Fibrosing Mediastinitis.
Evan has Tyrosinemia Type I
Evan has Tyrosinemia Type I
A big thank you to my amazing coworkers who keep me feeling like a superhero each day, staying strong as I live with FMD (fibromuscular dysplasia)!
A big thank you to my amazing coworkers who keep me feeling like a superhero each day, staying strong as I live with FMD (fibromuscular dysplasia)!
We were in Daytona Beach for a Bunka Seminar and got together with a friend for a photo op in front of the Daytona International Speedway.
We were in Daytona Beach for a Bunka Seminar and got together with a friend for a photo op in front of the Daytona International Speedway.
Nancy & Jessica in TX Representing Hermansky Pudlak Syndrome
Nancy & Jessica in TX Representing Hermansky Pudlak Syndrome
Hannah in TX is diagnosed with Idiopathic chronic pancreatitis.
Hannah in TX is diagnosed with Idiopathic chronic pancreatitis.
Gavin and 2 others with Rare Diseases and his PE Class in the United States
Gavin and 2 others with Rare Diseases and his PE Class in the United States
Gavin, Mrs.Jody (PT) and Mrs. Amy (OT)
Gavin, Mrs.Jody (PT) and Mrs. Amy (OT)
Suncoast Striders Moving for Gavin
Suncoast Striders Moving for Gavin
Gavin's Pediatrician's Office- East Lake Pediatrics
Gavin's Pediatrician's Office- East Lake Pediatrics
Gavin Moving His Way for Friedreich's Ataxia
Gavin Moving His Way for Friedreich's Ataxia
Zane is currently 15 months old, diagnosed with FPIES at 6 months old
Zane is currently 15 months old, diagnosed with FPIES at 6 months old
Erin, a patient living with 2 rare diseases - CVID and Sjogren's Syndrome
Erin, a patient living with 2 rare diseases - CVID and Sjogren's Syndrome
Madeline has Freeman Sheldon Syndrome.
Madeline has Freeman Sheldon Syndrome.
Gabriella (8) & Victoria (5), sisters with FMF (Familial Mediterranean fever )
Gabriella (8) & Victoria (5), sisters with FMF (Familial Mediterranean fever )
State Senator Donna Campbell and participants in the Rare Disease Day Texas Rally at the Capitol
State Senator Donna Campbell and participants in the Rare Disease Day Texas Rally at the Capitol
Lindsay, a 22 year old full-time 7th grade teacher, dialysis patient, and Dense Deposit Disease (DDD) patient, in South Sioux City, Nebraska
Lindsay, a 22 year old full-time 7th grade teacher, dialysis patient, and Dense Deposit Disease (DDD) patient, in South Sioux City, Nebraska
Caitlin is diagnosed with FPIES (Food Protein-Induced Enterocolitis Syndrome). Her handprint may be small, but she is still determined to raise awareness!
Caitlin is diagnosed with FPIES (Food Protein-Induced Enterocolitis Syndrome). Her handprint may be small, but she is still determined to raise awareness!
Bridget is diagnosed with FPIES (Food Protein-Induced Enterocolitis Syndrome). Even though she struggles with food, she still works very hard to help her baby sister who is affected by the same disorder.
Bridget is diagnosed with FPIES (Food Protein-Induced Enterocolitis Syndrome). Even though she struggles with food, she still works very hard to help her baby sister who is affected by the same disorder.
Konner sharing hands for Hereditary Spastic Paraplegia and Dystonia
Konner sharing hands for Hereditary Spastic Paraplegia and Dystonia
Skye in HI is in recovery from Pheochromocytoma.
Skye in HI is in recovery from Pheochromocytoma.
Surviving Wegener's and raising awareness
Surviving Wegener's and raising awareness
Jullitta and her daughter raising awareness for Rare Disease Day!
Jullitta and her daughter raising awareness for Rare Disease Day!
Lechelle in PA
Lechelle in PA
HOSA: Future Health Professional Students-WarrenTech North
HOSA: Future Health Professional Students-WarrenTech North
Yael raising awareness for Dense Deposit Disease
Yael raising awareness for Dense Deposit Disease
My daughter and I both have thalassemia...rather than being something that holds us back, it's something very special that we share.
My daughter and I both have thalassemia...rather than being something that holds us back, it's something very special that we share.
Brooke, my granddaughter, has Mastocytosis, a Mast cell disorder, and asked me to color this picture. Hands working together to make a better world for those with Rare Diseases.
Brooke, my granddaughter, has Mastocytosis, a Mast cell disorder, and asked me to color this picture. Hands working together to make a better world for those with Rare Diseases.
Supporting my granddaughter, Brooke, in her quest to finding a cure for mastocytosis.
Supporting my granddaughter, Brooke, in her quest to finding a cure for mastocytosis.
Ryan is 2 years old. He has a rare genetic disorder 6q Duplication 14.3 -16.1 He is funny, strong, determined, and the most loving little boy.
Ryan is 2 years old. He has a rare genetic disorder 6q Duplication 14.3 -16.1 He is funny, strong, determined, and the most loving little boy.
The Staff at Mechanicville High School along with Donielle's family raising awareness for Rare Disease Day
The Staff at Mechanicville High School along with Donielle's family raising awareness for Rare Disease Day
Mechanicville Elementary School staff
Mechanicville Elementary School staff
Mechanicville High School 9th grade Biology Honors Class
Mechanicville High School 9th grade Biology Honors Class
This picture is for a wonderful husband and loving father who has been living with PNH since 2008.
This picture is for a wonderful husband and loving father who has been living with PNH since 2008.
Me and my best friend and best supporter, rockin our hommade Rare Disease Day Shirts.
Me and my best friend and best supporter, rockin our hommade Rare Disease Day Shirts.
CADASIL TWHH celebrated this special day with members of the Texas Legislature and many other rare disease organizations, Austin, Texas.
CADASIL TWHH celebrated this special day with members of the Texas Legislature and many other rare disease organizations, Austin, Texas.
Dusty
Dusty
Students, Faculty, Staff, and Community members in the Syracuse area
The Sigma Iota Chapter of Sigma Alpha Iota raised awareness via photography this Rare Disease Day!