Brave Community is a dynamic source of information and insights about certain rare diseases including Gaucher Disease, Hunter Syndrome, Fabry Disease, and others.

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NORD

NORD

NORD is a non-profit organization, established in 1983, representing all patients and families affected by rare diseases. It provides programs of education, advocacy, research and patient services. For more information about NORD, visit RareDiseases.org.

Top News and Insights

Featured Event:

global genes project

Fashion Show Benefit
The Global Genes Project and Reco Jeans are hosting a charity silent auction and fashion show to benefit those affected by rare disease, at Greenhouse in New York City, on September 9, 6-9pm. If you would like to buy tickets for this event, you can do so here.

Fabry Disease News

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Gaucher Disease News

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  • The Children's Rare Disease Network Launches Valuable Informational Blog - Redorbit.com

    Source: "rare disease day" - Bing News Submitted by:

    6/9/2010 3:39:00 PM

    R.A.R.E. Blog is a Place for Families Affected by Rare Childhood Diseases to Learn and Share Resources. "The R.A.R.E. blog is an important part of improving the lives of these children and their families who are affected ...

  • Jews share close genetics - NorthJersey.com

    Source: "gaucher disease" - Bing News Submitted by:

    6/4/2010 5:58:00 AM

    ... near extinction of European Jews in the Middle Ages — its major goal is to identify genes for many diseases that are more common in Jewish groups, such as breast cancer, Gaucher disease and Tay-Sachs. The Jewish people, according to ...

  • Shire Introduces First and Only iPhone(R) Application for Patients ... - PR Newswire

    Source: "gaucher disease" - Bing News Submitted by:

    5/25/2010 11:32:00 AM

    About Gaucher Disease Gaucher disease is an autosomal recessive disorder caused by mutations in the GBA gene which results in a deficiency of the lysosomal enzyme beta-glucocerebrosidase. This enzymatic deficiency causes an accumulation of ...

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HAE News

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  • Tests and diagnosis - MayoClinic.com

    Source: "hereditary angioedema" - Bing News Submitted by:

    8/10/2010 2:23:00 AM

    Your doctor will begin by asking you about your medical history. This may include asking you to create a detailed diary of exposure to possible irritants. It's important to tell your doctor about all medications you take ...

  • The Children's Rare Disease Network Launches Valuable Informational Blog - Redorbit.com

    Source: "rare disease day" - Bing News Submitted by:

    6/9/2010 3:39:00 PM

    R.A.R.E. Blog is a Place for Families Affected by Rare Childhood Diseases to Learn and Share Resources. "The R.A.R.E. blog is an important part of improving the lives of these children and their families who are affected ...

  • Unique Hereditary Angioedema e-Learning Initiative Launched at 29th Congress of the ... - Yahoo Finance

    Source: "hereditary angioedema" - Bing News Submitted by:

    6/9/2010 8:58:00 AM

    LONDON , June 9, 2010 /PRNewswire/ -- The HAE Awareness Programme was launched today, an online interactive training programme aimed to increase awareness of Hereditary Angioedema (HAE). Developed by an Editorial Board ...

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Hunter Syndrome News

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  • The Children's Rare Disease Network Launches Valuable Informational Blog - Redorbit.com

    Source: "rare disease day" - Bing News Submitted by:

    6/9/2010 3:39:00 PM

    R.A.R.E. Blog is a Place for Families Affected by Rare Childhood Diseases to Learn and Share Resources. "The R.A.R.E. blog is an important part of improving the lives of these children and their families who are affected ...

  • Unusual Medical Problems and Child Abuse - Associated Content

    Source: "rare disease day" - Bing News Submitted by:

    5/11/2010 7:20:00 PM

    Here are some disorders, including that which little Liliana had, that can be mistaken for child abuse: After I did the article on Rare Disease Day, I wanted to write about different diseases that are rare to call attention to them. Unfortunately ...

  • West Feliciana woman hopes win will provide change - Baton Rouge Advocate

    Source: "rare disease day" - Bing News Submitted by:

    3/24/2010 5:08:00 AM

    Ella Calhoun, a fourth-grade 4-H officer, helped the club mark World Rare Disease Day with special activities, with the help of her mom. Catherine Calhoun has become an active volunteer on behalf of those with a rare disease. A rare disease is ...

Read more articles on Hunter Syndrome
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  • Coping with medical issues

    Source: Submitted by: CommunityStories

    8/4/2010 9:17:47 AM

    Story submitted by: Michael Briggs

    In October 2008, Ryan was admitted to the Children’s Hospital for a course of antibiotics and physiotherapy to clear a lung infection which had been making him rather ill. There followed several more visits culminating in a Gastrostomy in November; this because he had been aspirating at a far greater rate than at first thought. After managing to pull the first feeding tube out Ryan eventually returned home in time for Christmas. However, he was now on three feeds a day with no more food by mouth; a devastating thing to happen, for food was the highlight of Ryan’s day. Now the family has had to get used to a new regime with Ryan missing out on family meals. He could not understand why he could no longer eat and to this day I am unable to eat in front of him.... More↴

  • Celebrating a birthday

    Source: Submitted by: CommunityStories

    7/6/2010 9:32:41 AM

    Story submitted by Michael Briggs:

    On Ryan's 10th Birthday we decided to have a party for all the wonderful carers who have helped us over the years. Ryan was delighted to see so many friendly faces and the day was a great success. He has the ability to make everyone who gets to know him, fall in love with him. Although he doesn't now speak, other than the odd word, one of his smiles makes the dullest day feel full of sunshine.

  • Fundraising

    Source: Submitted by: CommunityStories

    6/3/2010 7:55:29 AM

    Story submitted by Michael Briggs:

    On Ryan’s birthday my godson ran in a marathon with the proceeds going to the MPS Society. We raised over $16,000 which we felt was some small reward for all the help we had received from them. On the day, a friend who also has two boys with Hunters came down to support us. She has been a constant support and friend for Ryan's parents and illustrates the importance of getting to know the parents of other Hunters children.

Read more Personal Stories on Hunter Syndrome

MLD News

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  • MLD: A rare and serious progressive disease - Chicago Tribune

    Source: "metachromatic leukodystrophy" - Bing News Submitted by:

    8/24/2010 3:28:00 PM

    DEAR MAYO CLINIC : What can you tell me about metachromatic leukodystrophy? My granddaughter was just diagnosed but she has two older siblings who are perfectly healthy. How is that possible? ANSWER ...

  • The Children's Rare Disease Network Launches Valuable Informational Blog - Redorbit.com

    Source: "rare disease day" - Bing News Submitted by:

    6/9/2010 3:39:00 PM

    R.A.R.E. Blog is a Place for Families Affected by Rare Childhood Diseases to Learn and Share Resources. "The R.A.R.E. blog is an important part of improving the lives of these children and their families who are affected ...

  • Unusual Medical Problems and Child Abuse - Associated Content

    Source: "rare disease day" - Bing News Submitted by:

    5/11/2010 7:20:00 PM

    Here are some disorders, including that which little Liliana had, that can be mistaken for child abuse: After I did the article on Rare Disease Day, I wanted to write about different diseases that are rare to call attention to them. Unfortunately ...

Read more articles on MLD
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Read more Personal Stories on MLD

Sanfilippo News

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  • The Children's Rare Disease Network Launches Valuable Informational Blog - Redorbit.com

    Source: "rare disease day" - Bing News Submitted by:

    6/9/2010 3:39:00 PM

    R.A.R.E. Blog is a Place for Families Affected by Rare Childhood Diseases to Learn and Share Resources. "The R.A.R.E. blog is an important part of improving the lives of these children and their families who are affected ...

  • Boardin' For the Boyces - KSPR.com

    Source: "sanfilippo syndrome" - Bing News Submitted by:

    5/14/2010 7:02:00 PM

    ... young family… Justin and Stefanie Boyce have two beautiful children, Jayden and Brooklyn, who were both diagnosed with a terminally fatal disease known as MPS III, Sanfilippo Syndrome which is a rare genetic disorder that causes the body to ...

  • Unusual Medical Problems and Child Abuse - Associated Content

    Source: "rare disease day" - Bing News Submitted by:

    5/11/2010 7:20:00 PM

    Here are some disorders, including that which little Liliana had, that can be mistaken for child abuse: After I did the article on Rare Disease Day, I wanted to write about different diseases that are rare to call attention to them. Unfortunately ...

Read more articles on Sanfilippo
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Welcome To Brave Community

Brave Community is an online resources for patients, families, and health care professionals seeking more information about certain rare diseases and living with rare diseases. The web site is developed and maintained by Shire Human Genetic Therapies (HGT), a business unit of Shire plc.

BraveCommunity currently features information for 6 rare diseases:

  • Fabry diseases
  • Gaucher disease
  • Hereditary angioedema (HAE)
  • Hunter syndrome (mucopolysaccharidosis II, or MPS II)
  • Metachromatic leukodystrophy (MLD)
  • Sanfilippo type A (mucopolysaccharidosis IIIA, or MPS IIIA)

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