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Rare Disease Council

There are more than 7,000 rare diseases, impacting 25 to 30 million families in the United States. Lawmakers from Harrisburg are coming together to look out for those families in Pa.

They’ve formed the Pennsylvania Rare Disease Advisory Council, one of the first of it’s kind in the nation.

Senator Judy Ward is the senate co-chair for the council. She says the council is conducting a survey to determine what types of rare diseases are in Pa, where those families are located and how they can help.

Penny Brunner is excited by the formation of the new council and project.

Her grandson Miles was diagnoses with a rare genetic disease at a young age. Since then she’s founded the Smiles for Miles organization and has become an advocate for rare disease families.

Brunner says she helped push for this legislation and the formation of the council.

She says it gives families somewhere to turn for help.

“I hope that it helps the different organizations, such as the disease my grandson has, NKH. It’s very hard to get funding for research.”

“It feels really good to be a part of this project and give people hope and some answers.”

Bringing these families together could help lead to more solutions and support for all of them.

They’ve formed the Pennsylvania Rare Disease Advisory Council, one of the first of it’s kind in the nation.

Senator Judy Ward is the senate co-chair for the council. She says the council is conducting a survey to determine what types of rare diseases are in Pa, where those families are located and how they can help.

Penny Brunner is excited by the formation of the new council and project.

Her grandson Miles was diagnoses with a rare genetic disease at a young age. Since then she’s founded the Smiles for Miles organization and has become an advocate for rare disease families.

Brunner says she helped push for this legislation and the formation of the council.

She says it gives families somewhere to turn for help.

“I hope that it helps the different organizations, such as the disease my grandson has, NKH. It’s very hard to get funding for research.”

“It feels really good to be a part of this project and give people hope and some answers.”

Bringing these families together could help lead to more solutions and support for all of them.

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